TRILLIUM II · 2018. 6. 1. · Deliverable 3.1: Use case selection and analysis of patient summary use cases beyond emergency or unplanned care 1 TRILLIUM II Reinforcing the Bridges

Deliverable 3.1: Use case selection and analysis of patient summary use cases beyond emergency or unplanned care

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TRILLIUM II Reinforcing the Bridges and Scaling up EU/US Cooperation on Patient Summary

WP3 D3.1 v2017-11-10

Use case Selection and Analysis of Patient Summary Use Cases beyond Emergency or Unplanned Care

HL7 Foundation

1 June 2018

Project title: Grant Agreement: Call identifier:

Trillium Bridge II - Reinforcing the Bridges and Scaling up EU/US Cooperation on Patient Summary 727745 H2020-SC1-2016-CNECT

Dissemination level: Public This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 727745


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Deliverable description

Number and name of

deliverable:

D3.1 v2017-11-10 UseCaseSelection&Analysi-WP3-HL7Foundation

Publishable summary: A template for the description of operational scenarios extending the use of

patient summaries beyond cross border emergency or unplanned care was

developed taking elements from the eStandards/ reEIF template and the

ISO/TR19669 used by the work of the Joint Initiative Council on Patient

Summary Standard Sets. Focused workshops provided input to these

scenarios and are described in section of this report. A questionnaire was

developed to solicit input from the Global Community of Trillium-II and

select the use cases to be further elaborated on. The scenarios that will not

be selected in this first round will be available for further work in follow-up

projects or other pilots of the Trillium-II community.

Status: Final (resubmitted) Version: 1.2 Last update: 01.06.2018

Deadline: 31 December 2017

Actual delivery: 31 January 2018 (planned)

Lead beneficiary: HL7 Foundation

Contact: Catherine Chronaki, [email protected]

Contributors: Elaine Blechman, Giorgio Cangioli, Veli Stroetmann, Gokce Laleci

Erturkmen, Mie Mathiessen

Editors: Catherine Chronaki

Statement of originality

This deliverable contains original unpublished work except where clearly indicated otherwise.

Acknowledgement of previously published material and of the work of others has been made through

appropriate citation, quotation or both.

mailto:[email protected]


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Change History

Version Date Author Organisation

Description

0.1 09 Nov 2017

Catherine Chronaki

HL7 Foundation

Outline

0.2 30 November 2017

Catherine Chronaki

HL7 Foundation

Input form meeting on Nov 30 with Veli Stroetmann, [4.2/6.3], Kai Heitmann [2.1], Giorgio Cangioli [3.x], Alex Berler [2.x], Marcello Melgara [6.x], Catherine Chronaki [3.1, 6.2]

0.3 26 December 2017

Catherine Chronaki Elaine Blechman Gokce Laleci Erturkmen

HL7 Foundation

Input from Face to Face Meeting in Brussels on November 29-30. Use case contributed from Elaine Blechman Use case contributed from Gokce Laleci Erturkmen

0.4 31 Dec 2017

Giorgio Cangioli Catherine Chronaki

HL7 Foundation

Add information on workshops and remaining tables

0.5 9 Jan 2018

Catherine Chronaki

HL7 Foundation

Add information on additional patient summary use cases

1.0 20 Jan 2018

Catherine Chronaki

HL7 Foundation

Processed Review by Giorgio Cangioli, Mie Matthiessen, Gokce Laleci Erkturkmen; Results of online survey included

1.1 28 Jan 2018

Catherine Chronaki

HL7 Foundation

Comments from Giorgio Cangioli

1.2 1 Jun 2018

Catherine Chronaki

HL7 Foundation

Corrective action requested: D3.1 has to be revised to include justification of the decisions made and the decision-making process both for the use-case template and the criteria for selecting use cases. Summary of Revisions in response to reviewer comments: The Methodology section of the deliverable has been extended to address these comments. Assessment and review of relevant use case templates has been elaborated. Reasoning on the expected use of use case evaluation criteria for reflection purposes among Trillium II community members has been briefly explained. General comments related to risks, ethics, and relation to EHR/PHR will be taken into account in the elaboration of use cases. Already they can referenced or briefly summarized in the use case template under challenges and issues. However, these topics reserved for further analysis in the context of pilots/demonstrations, rather that the initial review which is the scope of this document.


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Table of Contents Executive summary............................................................................................................................................ 7

Reviewer Comments and overview of updates ........................................ Fejl! Bogmærke er ikke defineret.

1 Introduction ............................................................................................................................................... 8

2 Methodology ............................................................................................................................................. 9

2.1 Templates for operational scenario description of patient summary use cases ............................ 10

2.1.1 eStandards - Refined eHealth European Interoperability Framework .................................... 11

2.1.2 VALUeHEALTH ......................................................................................................................... 12

2.1.3 ISO/TR19669 ............................................................................................................................ 15

2.1.4 Patient Summary Scenario Description Template ................................................................... 16

2.2 Selection Criteria ............................................................................................................................. 18

3 Input from workshops to use cases of extending patient summaries. ................................................... 20

3.1 AgeingFit 2017 Panel: Preventive healthcare: Big data in active & healthy ageing. ....................... 20

3.2 European Commission Workshop: International Patient Summary: policy, deployment,

competencies, standards ............................................................................................................................. 20

3.3 Stakeholder Workshop: European Modular Field Hospital (EUMFH) ............................................. 21

3.4 Thematic Session: Citizens, Apps, and Data: The role of the Patient Summary.............................. 22

3.5 Workshop: Healthcare Information Standards for Frailty: Why, When and How .......................... 22

3.6 Workshop: Medication Reconciliation – time to rethink informatics support? .............................. 23

3.7 Mobile Health in Europe – Engaging ESH with other stakeholders in joint actions of the European

Commission and Member States: Time for Action ...................................................................................... 23

3.8 Other Workshops and contacts with Stakeholders ......................................................................... 24

4 Description of Patient Summary Use Case Scenarios .............................................................................. 25

4.1 Emergency and Disaster Management – Evacuation camp and Field Hospital .............................. 25

4.2 Patient summaries Continuity of care per chronic patients ............................................................ 27

4.3 Olympic Games – health care for Athletes, Olympic Family and Spectators .................................. 28

4.4 Integrated Care: Frailty scores for Elderly ....................................................................................... 31

4.5 Patient and Family Empowerment: Medication List Reconciliation ............................................... 32

4.6 Prevention: ESH Hypertension App – extending with Patient Summary data ................................ 34

4.6.1 Patient Summary Components for the Hypertension App ...................................................... 34

4.6.2 Template for extension of the ESH app ................................................................................... 35

4.7 WHO International Certificate of Vaccination or Prophylaxis (ICVP) (aka Yellow card) – Vaccination

Record 37

4.8 Medical Ids – Extending in Case of Emergency (ICE) ....................................................................... 38


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4.9 Last-Mile Use Case: When patients meet unfamiliar providers at point of care ............................ 40

4.10 Other scenarios of extending Patient summaries. .......................................................................... 43

5 Prioritization of Patient Summary Use Cases .......................................................................................... 44

6 Ethical Issues ............................................................................................................................................ 46

7 Summary .................................................................................................................................................. 46

8 Appendix: Supporting Information on Events ......................................................................................... 49

8.1 Conference Panel: AgeingFit 2017, Lille February 2-3, 2017 ........................................................... 49

8.2 European Commission Workshop: International Patient Summary - Bridging projects & Initiatives,

eHealth, Wellbeing & Ageing, EC DG CONNECT, Beaulieu 33, Room 0/54, Brussels .................................. 50

8.2.1 Scope and objectives ............................................................................................................... 50

8.2.2 Invited Initiatives ..................................................................................................................... 51

8.2.3 Event Report: International Patient Summary Workshop - Bridging projects & Initiatives .... 53

8.2.4 Workshop Participants ............................................................................................................ 55

8.2.5 Presentation slides: ................................................................................................................. 56

8.3 Stakeholder Workshop: European Modular Field Hospital (EUMFH) ............................................. 56

8.4 Health data requirements by WHO for Disaster and Emergency Medicine ................................... 59

8.4.1 The data set ............................................................................................................................. 60

8.5 Conference Sessions: Citizens, Apps, and Data: The role of the Patient Summary ........................ 73

8.6 Workshop: Healthcare Information Standards for Frailty: Why, When and How, Panel at

Informatics for Health, Manchester April 24-27, 2017 ............................................................................... 77

8.6.1 Rationale .................................................................................................................................. 77

8.6.2 Outcome .................................................................................................................................. 77

8.6.3 Panellists .................................................................................................................................. 77

8.6.4 Submitted Panel at MIE2017 ................................................................................................... 78

8.7 Workshop: Medication Reconciliation – time to rethink informatics support? .............................. 80

8.8 Workshop on Mobile Health at the European Society of Hypertension meeting........................... 82

8.8.1 Agreement between ESH and Trillium-II ................................................................................. 83

8.9 Questionnaire for prioritization of scenarios for extending use of patient summaries .................. 84

List of figures

Figure 1: Digitization of medicine requires that standards and interoperability move away from systems of

record and transactional thinking towards systems of innovation that focus on data and user experience. .. 9

Figure 2: Purpose of Trillium-II use cases, extending patient summaries of emergency or unplanned care

[cross-border] setting. ..................................................................................................................................... 10

Figure 3: The ESH Care app, endorsed by the European Society of Hypertension. ........................................ 35


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Figure 4: Screen shots of Medical Id on iPhone. ............................................................................................. 40

Figure 5: Session on Big Data for prevention in Aging Fit 2017, Lille, Feb 2, 2017 ......................................... 50

Figure 6: Program of Patient summary worshop organized on February 7, 2017 .......................................... 52

Figure 7: Priority information on patient demographics................................................................................. 60

Figure 8: Health record data set for emergency documentation, source WHO, 2017 ................................... 62

Figure 9: MDS tick on a box source WHO. ....................................................................................................... 65

Figure 10: MDS tally Sheet. ............................................................................................................................. 66

Figure 11: Daily reporting form to EMT coordination center. ......................................................................... 67

Figure 12: Feedback to coordination center, WHO 2017 ................................................................................ 68

Figure 13: Medical needs following the sudden onset of a disaster ............................................................... 69

Figure 14: Proposed list of complaints symptoms and signs by Dr. Van Berlaer in his thesis (2017) page 119.

......................................................................................................................................................................... 71

Figure 15: Identification of diagosis in the proposed template by Dr. Van Berlaer in his thesis (2017) page

120 ................................................................................................................................................................... 72

Figure 16: Account of events in the life of an elderly frail person (curtecy of focus project). ........................ 79

Figure 17: Life trajector of John Doe (courtecy of FOCUS project). ................................................................ 79

Figure 18: Role of the family in reconciling medication between episodes of care: Step V: Patient

Involvement Post-Discharge & Prior to Next Episode of Care [High 5s Project: Action on Patient Safety - SOP

Flow Charts] ..................................................................................................................................................... 81

Figure 19: Question: 1. Emergency and Disaster Management – Evacuation camp and Field Hospital.

Number of responses: 12 responses. .............................................................................................................. 85

Figure 20: Question: 2. Patient summaries Continuity of care for chronic patients. Number of responses: 12

responses. ........................................................................................................................................................ 85

Figure 21: Question 3. Olympic Games – health care for Athletes, Olympic Family and Spectators. Number

of responses: 12 responses. ............................................................................................................................ 86

Figure 22: Question 4. Integrated Care: Frailty scores for Elderly. Number of responses: 12 responses. ..... 86

Figure 23: Question 5. Patient and Family Empowerment: Medication List Reconciliation. Number of

responses: 12 responses. ................................................................................................................................ 87

Figure 24: Question 6. Prevention: ESH Hypertension App – extending with Patient Summary data. Number

of responses: 12 responses. ............................................................................................................................ 87

Figure 25: Question 7. WHO International Certificate Of Vaccination Or Prophylaxis (ICVP) (aka Yellow card)

– Vaccination Record. Number of responses: 12 responses. .......................................................................... 88

Figure 26: Question 8. Medical Ids – Extending In Case of Emergency (ICE). Number of responses: 12

responses. ........................................................................................................................................................ 88

Figure 27: Question 9. Last-Mile Use Case: When patients meet unfamiliar providers at point of care.

Number of responses: 12 responses. .............................................................................................................. 89


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Executive summary Task T3.1 considers operational scenarios that involve components of patient summaries as analysed in WP2

and WP3 with the aim to go beyond the use case of cross-border exchange of patient summaries between

health professionals in situations of emergency or unplanned care.

Different situations ranging from immigrants and disaster or emergency management, to chronic care or rare

diseases are considered. The common element in all of them in the person-centeredness, and connection to

the needs of citizens or communities.

A template for the description of operational scenarios extending the use of patient summaries beyond cross

border emergency or unplanned care was developed taking elements from the eStandards/ reEIF template

and the ISO/TR19669 used by the work of the Joint Initiative Council on Patient Summary Standard Sets.

Focused workshops provided input to these scenarios and are described in section of this report. A

questionnaire was developed to solicit input from the Global Community of Trillium-II and select the use

cases to be further elaborated on. The scenarios that will not be selected in this first round will be available

for further work in follow-up projects or other pilots of the community.


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1 Introduction Trillium-II WP2 “Assembling Interoperability Assets for Patient Summary Components” works with the HL7

FHIR Standard for Trial Use v3.0, using Art-Décor and Simplifier to develop resources for Medications and

Implantable devices (D2.3), Vaccinations (D2.4), Allergies and Intolerances (D2.5), and Problems and

Procedures (D2.6).

WP3 relies in part on the work of WP2 to extend the scope of patient summaries beyond the cross-border

exchange of patient summaries between health professionals in the context of emergency or unplanned care.

Considering the results of the eStandards roadmap and Digital Single Market Midterm review, Trillium-II

focuses on patient control and citizen engagement as well as capability to use patient summaries

productively in research. In that, the prospect of using patient summaries in conjunction with other sources

of data, such as patient generated data, environment, or location based will be examined if appropriate. WP3

relates also to WP4 with respect to engaging international agencies and the assessment framework, WP5

with respect to information governance, WP6 making in real with implementation in the global community

for the practice of digital health innovation, and WP7 in promoting the results among stakeholders.

WP3 starts with Task 3.1 which aims to analyse operational scenarios that use patient summary

components as candidate for use cases to be elaborated and implemented. At least two scenarios will be

selected for further elaboration, so that their information needs will be identified. The assets of WP2 and

those in WP3 will be then revisited so that implementation solutions for the patient summary content will

be developed.

The work of WP3 is outlined as follows:

• Collect patient summary use cases and select at least two “new” use cases extending the scope of

patient summaries beyond emergency/unplanned care away from home situations [Task 3.1].

• Identify the extensions to the WP2 “building blocks” required for the selected use cases, as needed

[Task 3.2].

• Deliver proof of concept implementation libraries for the selected use cases [Task 3.2].

• Analyze the Laboratory results content section, in the context of the patient summary [Task 3.3].

• Develop the Encounters reporting use case and refine the necessary components [Task 3.4].

• Explore the clinical imaging results section of the patient summary [Task 3.5].

• Assess the Security and Privacy requirements for the EU/US health data sharing [Task 3.6].

The work of WP3 will be subject to internal review by the panels set up in T6.2 in view of testing events,

demonstrations and pilot projects monthly, or more frequently if so needed. Specifically, for the use cases in

task 3.1 and their analysis in D6.2, WP4 (T4.3) will also be engaged.

Thus, the aim of task 3.1 is to elaborate scenarios where patient summaries are used to support health and

care for individuals and communities. The available components of the International Patient Summary

components as elaborated in WP2, and the additional components or building blocks which are the focus of

T3.3 (labs), T3.4 (encounters), and T3.5 (diagnostic imaging and signals) are the elements these use cases will

employ. T3.6 will analyse the security and privacy needs of the selected use cases. The requirement of the

selected use cases, may call for revision of the initial components. In the selection of the studies, we are

collaborating with WP4 (Context, role and adoption of the IPS in the global ecosystem) and WP6 (Making in

Real), since the intend is that the selected use cases will provide input to the demonstrations.


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For this purpose, the situations or scenarios considered focus where possible on the potential to unlock the

power of data and deliver user experience as shown in the figure below taken from the eStandards roadmap.

Figure 1: Digitization of medicine requires that standards and interoperability move away from systems of record and transactional thinking towards systems of innovation that focus on data and user experience.

The degree of integration of the extended patient summary in the health service varies. The description of

work already mentions possible situations where the role of patient summaries may be examined. These

include immigrants/refugees, disaster or emergency scenario, secondary use of aggregated patient

summaries, medical tourism, continuity of care, rare diseases, etc.

Using workshops and cooperation with other Horizon 2020 projects and the Global Community of Practice

these and other scenarios were analysed, discussed, and reviewed in cooperation with WP4 and consultation

with key stakeholders and subject matter experts. A template was developed to structure the discussion on

the scenarios with elements of the eStandards templates (reEIF) and ISO technical report used in the Patient

Summary Standard Set work of the Joint initiative council.

The community of Trillium-II, the advisory board, and external experts will be consulted on the relevance,

applicability, and impact of different scenarios of use for the patient summaries. Those along with the

willingness and ability of members of the GCP to implement the use cases identified in these scenarios will

be considered in the selection of the scenarios to be further elaborated on in Task 3.2.

The next section (Section 2) describes the Methodology used in this work presenting the template used for

the presentation of scenarios and the questionnaire used to vote for the use cases. Section 3, summarizes

the input received in specific workshops with more extensive input in the Appendix. Section 4, presents the

operational scenarios for patient summary use cases and Section 5, our conclusions along with the selected

scenarios for further elaboration in Task 3.2.

2 Methodology Many projects are using the use case instrument to capture user needs and guide the development of

technical specification to address it. In fact, in the recent years the use case driven approach has been

adopted as a structured way to respond to user requirements and business needs.

By adopting the approach advocated by the eStandards methodology, we would like to further strengthen

our focus on user experience, and unlock the value of data in making decisions in operational situations.


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Moreover, in the context of Trillium-II our aim is scaling up use of patient summaries and that strengthens

our focus on high quality trusted health data components (i.e. building blocks) with clear provenance and

timeliness that may come from different sources. Being data centric, it is important to employ semantic links

to connect more detailed or explanatory sources of health data to a patient summary component –

facilitating data exploration rather than pure transactional workflows.

Having this conceptual frame as a reference point, has led to the following observations:

• Health data is at the center and scaling up requires helping people work with health data exemplified by

patient summaries. Surrounding the health data cycle (i.e. patient summaries, link data, and extensions)

are quality assurance and provenance mechanisms, and in further outer circles policies, processes,

actors, and transactions (see Figure 2).

• Addressing a wide range of cases, where an “extended” notion of patient summaries is relevant (or not)

would be quite essential – a possible way to approach that would be to follow the value chain of health

data, i.e. wellness, prevention, public health, treatment, population health, clinical research, 112

emergencies, etc. This could also underpin the quality, access, cost triangle focusing on productivity.

Capturing the full value proposition of patient summaries would require selecting simple and intuitive

use cases from each category.

Figure 2: Purpose of Trillium-II use cases, extending patient summaries of emergency or unplanned care [cross-border] setting.

Several patient summary use case scenarios have been named in abstract terms during the preparation of

the proposal and further discussed during workshops. Information on these scenarios has been collected

from the literature and prior or concurrent digital health projects. Some of these use cases were the topic of

workshops that were developed in workshops held in major conference during 2017. These workshops

provided expert input for capturing vital aspects of operationalizing the patient summary.

Meanwhile, different templates were considered for the description of use case scenarios and subsequently

evaluated. The use case scenario template adopted has been selected based on its ability to capture fine

aspects of user needs as well as data orientation.

2.1 Templates for operational scenario description of patient summary use cases Work in eStandards and ValueHealth projects, as well as in the JIC patient summary standards sets, was

considered. The HL7 International Patient Summary (IPS) Project, and CEN IPS project have provided essential


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input. Most important also has been the contribution of the eHealth Stakeholders group, S&I subgroup,

which has served as a sound board for the eStandards roadmap methodology and the vision of the patient

summary as a window to a person’s health information and a dashboard for further information. The Joint

Initiative Council for global health informatics standardization with their work on patient summary sets has

provided the framework for the formal elaboration of the scenarios. The following section describes some

of the key templates considered.

2.1.1 eStandards - Refined eHealth European Interoperability Framework The eStandards project adopted an extended form of the use case descriptions of the eHealth DSI. A service1

provided by IHE Europe presents use case and realization scenarios largely based on IHE profiles2. Below is

presented the example of the use case description for the cross-border patient summary.

Title Title Patient summary sharing on a cross-border scale3

Purpose Sharing information about the medical background and history of a patient by a healthcare

professional in another country

Relevance Many people request medical help when travelling, working or living abroad. Medical information

from the country of origin should be available to all citizens in Europe (in their native language). The

current solutions (if any) for getting medical information from another country are often

cumbersome, unsafe, incomplete and non-standard. The treatment of patients without proper medical

background information is hazardous and should be avoided. Benefits can be gained from increased

quality of care (e.g. patient safety) (both medical and economical) and from decrease in effort of

gathering health information/exchanging health information. This Use Case proposes a way towards

solving this problem

Domain Patient Summary

Scale Cross-border

Context The definition of a patient summary was laid down by the epSOS project as a starting point for the

development and pilot testing of a patient summary for citizens who are travelling abroad and need

medical help (unplanned). Challenges are related to the level of data required and the quality of

information relevant to support patient treatment effectively across different participating European

countries. Different countries operate different health care systems. Each country follows its own

respective national jurisdiction, supports a different culture for healthcare provision, and uses a

different (or several different) language(s) (which may also involve different connotations of similar

medical terminology in literal translation). A patient summary provides background information on

important aspects such as allergies, current medication, previous illnesses and surgeries, et cetera.

These are necessary for the proper treatment of a patient abroad, especially when there is a language

barrier between the HCP (healthcare provider) and the patient. Actually two use cases are possible

with regard to the Patient Summary (PS). The first is the one in which an occasional visitor needs

his/her PS in country B. The second is the one in which the person is a regular visitor in country B

(i.e. someone who lives in one country but works in another country). The distinguishing

characteristic is that this type of occasional situation where the HCO may have some information

available from previous encounters. Both a PS of country A as well as one from country B needs to

be consulted. In this use case the use case of the occasional visitor is described. More extensive

information about this use case and Patient Summary requirements can be found in epSOS

Deliverable 3.2.2. Information about identification, authentication, authorisation, and consent sharing

can be found in epSOS D3.6

Information Patient Summary (in patient’s language and country B language) Patient consent

Participants Patient HCP in country of origin HCP in another country

1 https://usecase-repository.ihe-europe.net/ 2 http://www.estandards-project.eu/eSTANDARDS/assets/File/deliverables/estandards%20D2_1%20Extension%20of%20the%20eEIF%20Five%20new%20Use%20Cases%20V1_3.pdf 3 eHealth Network Refined eHealth European Interoperability Framework, page 18 https://ec.europa.eu/health/sites/health/files/ehealth/docs/ev_20151123_co03_en.pdf

https://usecase-repository.ihe-europe.net/

http://www.estandards-project.eu/eSTANDARDS/assets/File/deliverables/estandards%20D2_1%20Extension%20of%20the%20eEIF%20Five%20new%20Use%20Cases%20V1_3.pdf



https://ec.europa.eu/health/sites/health/files/ehealth/docs/ev_20151123_co03_en.pdf


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Functional

process

steps

(With reservation that preconditions are met – can be found in D3.2.2.) The patient consults a health

professional in country B (= not home country) The patient is identified (identity confirmed by

country A) The patients gives consent; either before travelling to country B or at country B via

information paper (except for emergency cases)(reference: epSOS Deliverable 3.6 Identity

management) • The patient gives consent to the health professional. The health professional will then

register this confirmation to participate in the epSOS network The HCP is identified, authenticated,

authorised. • The patient confirms his/ her willingness to participate • The health professional

retrieves the patient summary and uses it for the consultation. The patient summary is electronically

transferred from the patient's country of origin to the health professional in the country that s/he is

visiting (the "visiting country") in a secure way. PS is received in both the language of the patient

(PDF of original PS) and a translated version for the HCP.

This template focuses on the context and the functional process steps to the detriment of data orientation.

Moreover, it is offering a rather high-level layout of stakeholder challenges. Finally, it offers limited grounds

for comparison and engagement of the Trillium II community.

2.1.2 VALUeHEALTH The VALUeHEALTH (VeH) project (2015-2017) explored how, over the period 2015-2020, the Connecting

Europe Facility (CEF) offering support for cross-border eHealth services, can mobilize private and public

funding streams to implement and sustain the infrastructures needed through appropriate investment and

pricing mechanisms. In its deliverable D1.1 Example use cases and classification scheme4 it sets the ground

rules and criteria for prioritizing use cases recognizing that business priorities and local context influence the

selection of use cases in the context of eHealth strategies. Use cases considered focusing are grouped by

purpose: Health system, public health, education, administration, etc. Then, several questions are asked to

capture the business value and needs associated with each of them:

• Is the use case relevant? (e.g. What is the intended outcome?)

• Is it sustainable?

• Who is the user? (There may be more than one)

• Who benefits?

• Who provides / runs the service?

• Who pays?

• What are the opportunities / threats?

Building on this set of questions, each use case has been described using these headings:

• Title (plus Sub-title if this helps to clarify the meaning)

• Description

• Main beneficiary

• Pre-requisites

• Benefits

• Barriers

• Incentives

• Primary Scenario

Several VeH use cases in deliverable 1.1, relate to the topic of scaling up patient summaries. After reviewing

the relevant VeH use cases, we selected the most relevant to Trillium II, and in some cases slightly adapted

4http://www.valuehealth.eu/ValueHealth/assets/File/VALUeHEALTH_D1_1Example%20use%20cases%20and%20classification%20scheme.pdf


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them to highlight the citizen perspective. The use cases that were adapted are indicated with *. This input

was used as background when elaborating the Trillium-II scenarios of use, later in the document.

Online medication profile

Sub-title: My meds anywhere

Description: Secure online access to the patient's current and recent medications, available to the patient

and authorised health and care professionals, anywhere globally.

Main beneficiary: Patients

Integrated care and self-management for long-term conditions*

Sub-title: Individual Integrated disease management

Description: Condition-specific, semantically-interoperable, information sharing between actors involved in

the healthcare, social care and self-care of a patient's portfolio of long-term conditions.

Main beneficiary: HPs, Patients

Online continuity of care health summary*

Sub-title: Individual personal data (securely available) anywhere

Description: A consolidated online health and care summary that would meet the needs of emergency or

unplanned care but also support planned care (continuity of care for a patient's long-term conditions),

available to the patient and authorised health and care professionals, anywhere globally.


Coordinated cancer care*

Sub-title: as above

Description: To connect the actors involved in diagnosing, treating and supporting a patient with cancer,

providing them with distributed access to detailed (not just summary) cancer records from each care

setting and coordinating their activities through an integrated distributed care plan.


My care plan

Sub-title: as above

Description: This personalised care plan could range in focus from a single condition to the complete portfolio

of health issues, care issues and prevention matters relevant to a patient, in each case documenting the

problems, goals, and actors involved and scheduled care activities, with reminders.

Main beneficiary: Health professionals, citizens

Help keep patients at home

Sub-title: enable me to stay at home

Description: Primarily targeted at frail individuals, commonly the elderly, who might either have recently

been discharged from hospital or be at risk of deteriorating health at home. Sensors and monitoring devices

in the home or worn, integrated and monitored through smart algorithms and remote call centres, might

help early detection and prevent escalation of a health or care need.


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Main beneficiary: Citizen/ Patient if integrated system, HPs if set of sensors

Prevention plan

Sub-title: My prevention plan

Description: This use case focuses on health promotion, illness prevention and health screening programmes

that might be developed through multi-stakeholder collaboration at a regional or national level, and

delivered to citizens through mobile and wearable applications and personal health systems.

Main beneficiary: citizen/ patient

Safe prescribing*

Sub-title: as above

Description: This use case aims to ensure that decision support algorithms for prescribing (which already

exist) can access safety-critical information that may be held in the systems of multiple health care providers

who are caring for the patient: other current medication, allergies and intolerances, clinical conditions,

significant family history, relevant bio-markers etc. It extends the Medication Profile use case, enriching the

information content to form a kind of medical summary.

Main beneficiary: healthcare professional, Patients, Next of kin 5

Population health comparisons

Sub-title: as above

Description: European Member States want to share information about population health characteristics and

health status, illness prevalence, comparative effectiveness, clinical outcomes, reduction in adverse patient-

safety incidents and early detection of outbreaks etc. In order to improve the quality, sensitivity and accuracy

of the presently-available benchmarks (e.g. as published by OECD), there is a need to run data analyses on

fine-grained electronic health record information, in a standardised way so that the results are consistent

across equivalent sub-populations and countries, whilst safeguarding personal confidential data.

Main beneficiary: decision making person (including HPs/organisation)

Pharmacovigilance*

Sub-title: as above

Description: There is recognised under-reporting of drug safety issues (such as significant adverse reactions),

possibly due to the effort involved by clinical practitioners in filing a report, and at times the lack of awareness

that a clinical event might be caused by a drug. Decision support systems embedded within EHR systems and

clinical applications and personal health records can be designed to prompt clinicians and citizens to consider

whether a drug has caused a clinical observation such as a symptom and can semi-automatically generate

most of the necessary report, for quick review and electronic submission.

Main beneficiary: HPs, Patients, Next of kin

Clinical trial matching

Sub-title: Match me to a local clinical trial

5 See also the description of the relevant workshop in Informatics for Health 2017 in the next section.


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Description: More patients may wish to have the opportunity to take part in a clinical trial related to their

condition. Systems can take the criteria for a new clinical trial and match them to eligible patients within an

electronic health record repository. There is a need to scale-up such systems across Europe, in a standardised

way, and to enable patients themselves to provide their health history and disease situation into an online

environment that can search for relevant trials in their geographic vicinity.

Main beneficiary: specific patient

Education: Key care facts*

Sub-title: My key facts

Note: this is intended for health and care professionals (but not about making the diagnosis)

Description: A well-indexed, searchable, user-friendly and up-to-date compendium of clinical knowledge

covering a comprehensive set of clinical conditions. This is needed because of the rapid advances in medical

knowledge and the sheer volume of such information. It is difficult for practitioners to keep up-to-date,

especially about conditions they rarely see; this should link to EHRs so the most relevant care facts can be

presented to the clinician.

Main beneficiary: HPs, Citizens

Diagnosis support*

Sub-title: Diagnosis outside the box

Description: A pattern matching medical knowledge service that can take the presenting clinical profile of

the patient (symptoms, signs, investigation results, past-history) and provide a probabilistic differential

diagnosis. This use case is envisaged to be primarily delivered as a background service to clinicians, to prompt

them to consider a diagnosis that appears not to have been made in the patient but is highly likely.


In VeH Deliverable D1.2 “Prioritized use cases”, a more extensive template is used6:

Reference #

Use case name

Stakeholder story

Starting event

Actor and Users

Goal

Stakeholders

The VeH templates were considered for further analysis taking a patient perspective using the expanded

template of Trillium-II in a follow-up section. Although more high level that the eStandards one, it is much

more engaging and tuned to the question “what is the job that patient summary needs to do”?

2.1.3 ISO/TR19669 The technical report ISO2017 that we use for the description of use cases is quite extensive and depending

on the use case, we have explored to a different degree. What has been important in this work as compared

to previous efforts.

Challenge Statement

6 http://www.valuehealth.eu/ValueHealth/assets/File/VALUeHEALTH_D1_2%20Prioritised%20Use%20Cases.pdf


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Use Case Scope

In Scope

Out of Scope

Communities of Interest/Stakeholders

Value Statement

Use Case Assumptions

Pre-Conditions

Postconditions

Actors and Roles

Use Case Diagram

Scenario

User Story

Activity Diagram

Base Flow

Alternate Flow

Functional Requirements

System Requirements

Sequence Diagram

Risks, Issues and Obstacles

This use case template is much more detailed that the eStandards and VeH. Discussing this template as a

format to analyse the use cases proposed by VeH, we realized that it requires a lot of detail that can be only

specified if the particular context of implementation is thoroughly defined. However, this can only happen

once potential pilot is decided. Thus, the team felt that simplification of this template was the preferred

action. Ethical issues can be included in Risks and Issues, but in most cases Ethical issues and associated

processes again, can only be analysed in a specific pilot or demonstration setting.

2.1.4 Patient Summary Scenario Description Template Striking the right balance between the eStandards, VeH, and JIC template, taking into account the

requirements in Figure 2 and the Trillium II focus on patient summary components or building blocks to be

used and further refined in pilots and demonstrations, we came up with the following template and guidance:

Challenge Statement what is the problem we are trying to solve with patient summaries?

Communities of Interest/Stakeholders

What do we do this for?

Value statement What is the value proposition? User Story What scenario illustrates the value of patient summaries? (a

graphic would be nice) Policy environment What are the relevant policy and regulatory issues? Information how health data records are captured, retained and conveyed in

this business context? Patient summary components What are the relevant patient summary components? How are

they constrained or extended? What are the data set requirements?

Provenance and timeliness Where does the information come from? Who is responsible for it? How recent is it? What are the functional requirements?

Quality assurance What are the quality standards components are subject to?


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Governance How is the information governed? Risks – Security & Privacy What are the privacy and security requirements – what are the

safeguards Pilot projects and/or services Who has implemented patient summaries for this situation? Anticipated impact How many people or organizations will be impacted? Open Issues Anticipated interoperability maturity level

What is the anticipated level of interoperability today?


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2.2 Selection Criteria The initial template for the description of the patient summary use case should be simple, clear and data

centric. Depending on opportunities, implementation potential, interested stakeholders, and anticipated

impact we can further elaborate specific use cases as part of potential pilot projects. A questionnaire was

developed for members of the Advisory Board and the Global Community of Trillium-II to comment on these

scenarios and vote for the selection of the ones to be proposed for further elaboration in Task 3.2.

VeH has proposed a potential classification scheme that can be used to characterise the use cases, identifying

a set of dimensions and accompanying measures7. The full list appears in the Appendix:

o impact on patient care

o Potential impact on health systems and services

o Policy alignment

o Informatics and health ICT alignment

o Likely to be successful at scaling up

o European dimension

o Easy for the Trillium-II community to demonstrate.

From the criteria outlined by VeH, four are the ones that we decided to take into account in our assessment

of use cases in an effort to encourage demonstrations and pilots of patient summaries components by

interested community members. Thus, arguing about impact on patient care through telling scenarios is

essential, same holds for the ability to demonstrate and capacity to scaleup.

Building on this classification scheme, a list of criteria for the prioritization of use cases was suggested:

1. Potential positive impact on individual patients

2. Potential positive impact on number of individuals (patients, family, carers)

3. Improved health outcomes

4. Improved health system productivity

5. Reduced healthcare costs

6. Improved access (to services)

7. Technical and semantic feasibility

8. Applicability across all 28 countries

9. Capital costs avoided/contained

10. Potential impact on health professionals

11. Market stimulation

12. Legal achievability

13. Political acceptance

14. Existing experience

All these criteria, are interesting and useful, but the Trillium-II team is doubtful as to whether we can obtain

objective results for these criteria in the lifetime of our project: can we accurately evaluate the reduction of

costs, can we assess the improved outcomes, and so on?

7http://www.valuehealth.eu/ValueHealth/assets/File/VALUeHEALTH_D1_1Example%20use%20cases%20and%20classification%20scheme.pdf, page 17.

http://www.valuehealth.eu/ValueHealth/assets/File/VALUeHEALTH_D1_1Example%20use%20cases%20and%20classification%20scheme.pdf

http://www.valuehealth.eu/ValueHealth/assets/File/VALUeHEALTH_D1_1Example%20use%20cases%20and%20classification%20scheme.pdf


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Therefore, the use cases will be selected predominately based on the opportunities to demonstrate the

value of patient summaries in various operational contexts and the interest of members of the consortium

and the broad Trillium Bridge community for the practice of innovation to participate.

Thus, at this stage, these criteria help only indirectly guide the discussion and reflection process on use

cases for detailed analysis as well as the experiments carried out in the pilot demonstration phase. In

preparation for demonstration pilots and the readiness exercise, these criteria will no doubt provide input to

the evaluation framework.

Therefore, they will be most helpful to organizations that choose to deploy as is or in an extended or adapted

format one of the proposed used case scenarios. It is during deployment that these criteria need to be

carefully assessed and evaluated.

Aiming to attract potential pilots and demonstrations among the members of the Trillium community we run

a questionnaire asking the members of the consortium associated with a regional or national authority,

entrepreneurs, or associations to contact their members and request that they express their preferences to

the use cases along with their intention to demonstrate or pilot.

Initially, the questionnaire was addressed to the members of the consortium as the means to activate them

and broaden the circle of participation among the members of the organization, since Trillium II does not

have money to offer to potential pilots. The results of the questionnaire prepared for this purpose appear

later in the document.

The rating of the questionnaire is simple averaging of the use case ratings (1-5) across partner organizations

that were invited to respond. For each use case we also reported separately prioritization among those

strongly interested or simply interested in piloting/demonstration. The number of organizations that

indicated interest to pilot was also taken into account in separate columns. Eventually prioritization of use

cases involved selecting those that engage as many organizations from the Trillium community as possible.

The outcome of the evaluation is presented in the section “Prioritization of Patient Summary Use Cases”.

Meanwhile, next our plan is to present the use case scenarios in the website, allowing member of the

community to contribute additional use case and evaluate the existing ones along with the resources

provided by Trillium II.


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3 Input from workshops to use cases of extending patient summaries. Over the last year we organized or participated in a number of workshop aiming to analyse the potential use

of patient summaries in a specific setting. These events which are covered in some detail at the appendix,

offered important insights for the elaboration of scenarios. Several workshops where the patient summary

was presented as an example of co-creation, governance and alignment, provided additional input:

3.1 AgeingFit 20178 Panel: Preventive healthcare: Big data in active & healthy ageing. AgeingFit 20179, Lille France was a nusiness convention organized in Lille France, 1-2 February, 2017. Relevant

session: ”Preventive healthcare: exploring big data’s rising role in active and healthy ageing” attracted 70-90

people in the room interested in information technology for the elderly.Catherine explained the idea of

patient summaries as a window to a person’s health or personal dashboard offering access to medications,

allergies, vaccinations, problems and procedures, labs, diagnostic imaging, recent or planned Encounters,

implantable devices, and advance directives. She argued that patient summaries can be useful in navigating

the health system and help bring “Bring the Power of Platforms to Health Care” using data to drive

administrative automation, networked knowledge, and resource orchestration10. An illustrative example

provided was appointments, where technology and big data are used to increase productivity in virtual and

f2f just-in-time appointments.

Discussion with the audience highlighted the concerns of French citizens with privacy especially in the context

of insurance companies. Clarifying the rights of the people to patients and benefits of using data to connect

different systems, placing the rights of the individual at the center is essential.

3.2 European Commission Workshop: International Patient Summary: policy, deployment,

competencies, standards On 7 February 2017, the European Commission (the eHealth, Wellbeing and Aging Unit, DG Connect) hosted

a concertation workshop of European projects and initiatives (eStandards, VALUeHEALTH, EU-US eHealth at

Work, EURACARE, Trillium Bridge II and JAseHN) related to the International Patient Summary - policy,

deployment, competencies, and standards11. The event attracted 25-30 people from Europe and the United

States. From the event description that Trillium-II played an active role organizing “A Patient Summary is a

digital dataset that includes the most important clinical facts required to ensure safe and secure care. When

this summary is made available to the treating physician or the relevant health team, it becomes especially

useful (and sometimes even critical) for the patient's safety in situations of unplanned or emergency care.

Several EU member states and regions have already implemented some form of patient summary in their

national healthcare system. Now the challenge is to have an International Patient Summary that can be

readily accessible and understood at the point of care in any country around the world.”

In the event member states described the state of play in their implementation focussing on the supporting

legal framework, operational aspects, and prospects of extending implementation to other situations. The

workshop report is included in the appendix.

8https://www.eurasante.com/wpfb-file/ageingfit-2017-programme-2017-pdf

10 Bush & Fox, HBR 2016, https://hbr.org/2016/11/bringing-the-power-of-platforms-to-health-care 11 https://ec.europa.eu/digital-single-market/en/news/international-patient-summary-policy-deployment-competencies-and-standards

https://www.eurasante.com/wpfb-file/ageingfit-2017-programme-2017-pdf

https://hbr.org/2016/11/bringing-the-power-of-platforms-to-health-care

https://ec.europa.eu/digital-single-market/en/news/international-patient-summary-policy-deployment-competencies-and-standards

https://ec.europa.eu/digital-single-market/en/news/international-patient-summary-policy-deployment-competencies-and-standards


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Henrique Martins concluding his presentation points out: "Let the patients help build their own patient

summaries so that it makes sense to them, rather than aim for an elusive complete picture of a person's

health."

From the standards perspective, Steven Kay from the CEN IPS project noted "the window has to be positioned,

resized and fit for purpose so that it can pick out all of the relevant bits of the patient data, not just one narrow

aspect. If the patient summary is the eyes, then standardization is helping frame and focus the picture." He

moved on to underline that "the international patient summary has to be focused, otherwise it won't be

useful. For that to happen, agreement on the data needs to be reached. How data will be transported is a

secondary issue."

Main conclusions of the workshop are that the term “patient summary” has a different meaning in different

settings, resulting in the fragmented landscape highlighting lack of a shared vision. Health professionals

cannot afford more data entry, therefore automatic creation of patient summaries is essential. Prioritizing

information for presentation in the patient summary is key, primarily in emergency situations.

A rapporteurs’ report from the session on cooperative care, merits inclusion in view of the potential use of

patient summaries to facilitate continuity of care and additional information of specific country approaches

appears in the appendix.

3.3 Stakeholder Workshop: European Modular Field Hospital (EUMFH) Antwerp, Belgium, March 6-8, 201712

On March 6-8, 2017 the EUMFH project-consortium hosted the stakeholder workshop as the kick-off for their

project. The team invited all relevant organisations to Antwerp, where they collectively worked around four

identified “pillars” in the Emergency Medical Team guidance (Governance, Healthcare, Logistics and Staff,

Training and Exercise). The first day of the workshop was dedicated to presentations by guiding organisations

as the World Health Organisations EMT-secretariat and the Directorate General ECHO of the European

Commission which presented the European Medical Corps. After this there were testimonies from 3

organisations that were recently verified by the World Health Organisation as Emergency Medical Team Type

2 (Japan and Russia) or Type 3 (Israel). The project European Modular Field Hospital (EUMFH) aim is to

explore the possibilities of establishing a European level 3 Emergency Medical Team by using a joint effort

from different European Member States and to improve the medical capacity of the Union Civil Protection

Mechanism.

Each of the four pillars Governance, Healthcare, Logistics and Staff, Training and Exercise were explored in

workshops. In terms of Governance the following questions were explored in terms of assets for the EUMFH:

a) How will the asset be composed?

b) How will the EUMFH be activated?

c) Who is responsible during the deployment, in the field and in back-office, clinical and non-clinical?

d) Which certifications / verifications / classifications will be adhered to?

e) How will the facility be staffed?

f) Who will take the clinical responsibility?

g) How does the demobilisation-phase look like?

12 Material extracted from Workshop report. http://www.johanniter.de/die-johanniter/johanniter-unfall-hilfe/home/news/news-2017/join-by-the-first-meeting-of-the-european-modular-field-hospital-project/


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More information on the workshop discussions is included in the appendix. The description of work

foresees demonstration of Trillium-II results in a readiness exercise. Such an opportunity arrises in Aix-de-

Provence in mid-October 2018.

3.4 Thematic Session: Citizens, Apps, and Data: The role of the Patient Summary Portuguese eHealth Summit, April 4, 2017

Two sessions were organized as part of the Portugal eHealth Summit, in April 2017. The topic was different

uses of the patient summary in hypertension (Prof. G Parati), nutrition (Prof A Moen), rehabilitation (Dr.

Josep M. Tormos Muñoz), continuity of care (J. Hofdijk), and frailty (Prof. S. Santana). Then, in cooperation

with the eStandards project, we reflected on the role of medical informatics (Prof. Pincerolli), and standards

(Chronaki, Orlova) as well as associated business models as part of the VeH project (Kolitsi).

There was rich discussion, about the role of standards and interoperability in the emerging data intensive

society. The question of models serving as standards was discussed. The application of the eStandards

methodology of co-creation, governance, alignment serving as a digital health compass applicable to the

extension of patient summaries was very well received.

The workshop provided input to a large number of scenarios for extending patient summary use in Frailty,

Rehabilitation, Continuity of Care and Nutrition and Hypertension.

The program of the session and links to the presentations appear in the appendix.

3.5 Workshop: Healthcare Information Standards for Frailty: Why, When and How Informatics for Health, Manchester, April 24-27, 2017

This was a workshop accepted in Informatics for Health entitled (Healthcare Information Standards for

Frailty: Why, When and How by Silvina Santana from the University of Aveiro, Barbara d’Avanzo from IRCCS

Istituto di Ricerche Farmacologiche Mario Negri, Italy, , Maria Bujnowska, Wroclaw Medical University,

Wroclaw, Poland, Maura Marcucci from Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Italy,

and Catherine Chronaki), a cooperation between the Focus project (focus-aha.eu/) and Trillium II. The

workshop started with a user story and a layman’s medical description of the frailty problem. The problem

was placed in the context of integrated care and its requirements from information and interoperability

perspective. The discussion covered a number of questions that touch upon indicators for successful frailty

interventions and the potential of interoperability standards and emerging solutions based on patient

summaries to drive innovative health services:

• where are we and where do we wish to be?

• what do current tools and approaches to standards do to support the flow of information of a frail person on a health-illness trajectory?

• what are the challenges that must be addressed to improve coordinated, holistic services when caring for frail elderly citizens?

• what initiatives are necessary to create an information infrastructure for frail people to navigate their complex life?

• can an augmented or extended patient summary serve to coordinate and orient the care and daily life of frail people?

This workshop provided input to the scenario for the operationalization of patient summaries in the context

of integrated care for elderly patients at risk for frailty. The key point highlighted was the ability to link patient

summaries to assessment tests. The outline of the workshop as well as links to presentation appears in the

appendix.


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3.6 Workshop: Medication Reconciliation – time to rethink informatics support? Informatics for Health, Manchester, April 24-27, 2017

Anne Moen (University of Norway), Petter Hurlen (Akershus University, Norway), Line Linstad (Norwegian

Centre for E-health research), Chris Nøhr (Aalborg University, Denmark) and Catherine Chronaki (HL7

Foundation) reflected on how much or how little effective we are in medication reconciliation, sharing

experiences from Europe, Norway and Denmark in the “Medication Reconciliation – time to rethink

informatics support?” workshop organized in the frame of Informatics for Health, in Manchester, UK, April

24-27, 2017.

The workshop engaged the attendees in live discussion and sharing of experience. There was consensus that

actively engaging the patient-cycle in the quality assurance process of their medication, you build pressure

in all parts of the chain to improve effortless and productive information capture, sharing, and use.

The full description of the workshop with links to the talks appears in the appendix. This workshop provided

input to the medical reconciliation scenario of the patient summary.

3.7 Mobile Health in Europe – Engaging ESH with other stakeholders in joint actions of the

European Commission and Member States: Time for Action Annual European Society of Hypertension (ESH) Meeting, June 16, 2017.

European Society of Hypertension joined forces with Trillum-II Project on the Global Community for the

Practice of Health Innovation and promote the vision of the patient summary as a window to a patient’s

health information, on May 16-19, in Milan during the 27th European Meeting on Hypertension and

Cardiovascular Protection. In a joint session of the European Commission and European Society of

Hypertension, participants shared knowledge and experience in the daily practice of mHealth. Opportunities

for synergies between the ESH, members of the EC eHealth stakeholders group (DG-CONNECT) and the

eHealth Network (eHN) were discussed recognizing that it is ‘Time for Action’ in mHealth.

Just prior to the session, Catherine Chronaki, scientific coordinator of the Trillium-II initiative and Secretary

General of the HL7 Foundation and Professor Enrico Agabiti Rosei, Chairman of the ESH signed a

memorandum of understanding to cooperate in the framework of the Global Community for the Practice of

Health Innovation to be established by Trillium-II and promote the vision of the patient summary as a window

to a patient’s health information. This is a timely moment, as the ESH promotes its ESH Care app for citizens

with hypertension throughout Europe and Trillium Bridge II project aims to promote the broad adoption of

the International Patient Summary standard.

A joint working group will be established to elaborate, in a co-Creation spirit, patient summary extensions

appropriate for capturing and assessing cardiovascular risk factors. The group will also explore the possibility

of implementing the International patient summary standard within the ESH CARE app, that has been

developed under the auspices of the ESH and is promoted for use by hypertension patients throughout

Europe and globally.

This event organized in collaboration with the European Society of Hypertension, as association of physicians

committed to mHealth. Further information on the session and the signed agreement are part of the

appendix.


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3.8 Other Workshops and contacts with Stakeholders Trillium-II participated in several additional workshops and events, which have not been processed yet. We

anticipate continuing existing and establish new collaborations in 2018. Here are some of these events with

participation of Trillium II:

• How can the patient summary improve risk assessment for insurers? In "Digital health and insurance:

a perfect partnership? “ Royal Society of Medicine, London, June 1, 2017

• International Workshop: International Patient summary workshop, hosted by HL7 China, Beijing,

August 18, 2017

• International Workshop: Exploring healthcare inefficiencies: the case of health care appointments,

Medinfo2017 Hangzhou, August 23, 2017

• International Workshop: Building a global community for digital health innovation: the role of patient

summaries, Medinfo August 24, 2017

• Digitization of the Emergency Department, workshop at EUSEM2017, September 25, 2017. This

workshop initiated cooperation with the European Association of Emergency Physicians which we

hope to continue in 2018.

• eHealth Standards and Interoperability in Cardiology: the role of clinical guidelines in Patient

summaries, Computing in Cardiology, Rennes, September 27, 2017

Other presentations with stakeholder interaction are as follows:

• I~HD and EMIF Conference, Realizing the value of Health Data, Improving Care and Research, Madrid

September 20, 2017

• Can International Patient Summary Standards to improve risk assessment for insurers and payers?

EFMI STC Conference "The practice of patient centered care: Empowering and engaging patients in

the digital era", Tel Aviv, 22-23 October 2017

• Digital Enlightenment Forum, Towards a European Ecosystem for Health Care Data, Brussels, Oct 25,

2017

• The future of Healthcare at the Age of Digitization, Antall Jozsef Knowledge Center, November 8,

2017

• Multiple meetings of the eHealth Stakeholders group.


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4 Description of Patient Summary Use Case Scenarios In this section, we use the template developed to reflect on elements of patient summary use in different

settings. This work is not meant to be exhaustive, but we took effort to reflect on the input collected in

workshops and stakeholder engagement events during 2017. From a technical viewpoint, the granularity of

the use cases scenarios is uneven (e.g. chronic disease and hypertension), since they have been contributed

by different members of the team and different situations in mind. This is intentional, as we wish to focus on

the needs addressed, general or specific, rather than the technical use case. The information provided in the

templates and the appendix aims to help members of the consortium prioritize these situations of using

patient summaries and guide the next steps of the project. Meanwhile, refinement of these scenarios as well

as addition of new ones, will continue in 2018 within WP3, but also WP4 and WP6.

4.1 Emergency and Disaster Management – Evacuation camp and Field Hospital Challenge Statement what is the problem we are trying to solve with patient summaries?

In Emergency and disaster management we are trying to capture the summary information of a disaster patient – carrying over context information that may be available in advance. This information is essential both in its primary as well as in aggregated form.

Communities of Interest/Stakeholders What do we do this for?

We do this for people that are stressed and for humanitarian missions that put themselves in danger to help fellow people. Information technology can improve the value chain in disaster management – capturing important information.

Value statement What is the value proposition?

With high quality information available promptly the needs of disaster and evacuated people will be served timely and effectively with safety.

User Story What scenario illustrates the value of patient summaries? (a graphic would be nice)

Consider a large-scale disaster – like an earthquake, a flood or a CBRN disaster. People are injured, misplaced, confused and in pain. Among them vulnerable groups like children or elderly. Can we identify accurately and promptly respond to their needs? What if they have an up-to-date patient summary? Important actors for patient summaries area the European Civil Protection modules of Field Hospital and evacuation camps.

Policy environment What are the relevant policy and regulatory issues?

There are privacy concerns in disaster medicine. Individual as well aggregate information is very important. Capturing accurate information can also help in training.

Information How health data records are captured, retained and conveyed in this business context?

The question how manage patient summaries in a field hospital or an evacuation camp are still subject to discussion. Some of these questions are addressed in appendix. However, the main conclusion so far is that the area of disaster medicine is rather disconnected for the rest of the health system.

Patient summary components What are the relevant patient summary components? How are they constrained or extended? What are the data set requirements?

These questions and others have been addressed by the WHO EMT work the Personal Health Record developed by the Institute of Migration and Dr. Van Berlaer’s thesis that are discussed in the Appendix. Note that the challenge points to multiple technical use cases. Moreover, emergency and disaster response can host every single one of the use case scenarios that follows. Perhaps, one specific point is the aggregation of patient summaries to draw conclusions on the community covered. Thus, all components of the patient summary


26

are applicable to this scenario of use along with additional ones specific to the reporting needs of the emergency response team.


These questions are pertinent and important to a disaster scenario. During the disaster in Japan- there were not electronic health records available. Depending on the disaster the information may come with the patient, from the health system or be created on site to move with patient to the next step.

Quality assurance What are the quality standards, components are subject to?

Timeliness and accuracy of the information in important – but also simplicity and prioritization are essential. Maintaining short coded templates that allow completion in a matter of seconds is essential.

Governance How is the information governed?

In disasters the Ministry of Health or Ministry of Interior takes control frequently under an inter-ministerial committee. On site the Emergency team is maintaining information, frequently on paper and share this information with the coordination center that makes decisions.

Risks – Security & Privacy What are the privacy and security requirements – what are the safeguards?

The privacy and security requirements and safeguards, specific to emergency response are to be investigated. There is a trade of between security and privacy on one side and efficiency and effectiveness on the other.

Pilot projects and/or services Who has implemented patient summaries for this situation?

The templates available have some similarities to the international patient summary. The data set must be focused and constrained. This can be achieved with constrained user interface terminologies. Preparing for the disaster response exercise could help constraint the existing components and value sets.

Anticipated impact How many people or organizations will be impacted?

The health system, the Emergency Medical Team (EMT) members and the EMT coordination centre from the information point of view. The community under distress and potential visitors from other countries as well. Information is important for evidence based decision making.

Open Issues The area of disaster and emergency medicine is quite broad and prioritizing correctly is essential. Scenarios to be demonstrated in this setting should be carefully selected to be simple but realistic, taking into account the limited resources available from every perspective. In this sense, working further on this case is worth considering whether we should split this scenario in multiple use cases: (1) use individual pre-existing PS for care provisioning (2) use aggregate information based on pre-existing PSs

(3) create a summary during the field encounter as special case for D3.4

Anticipated interoperability maturity level What is the anticipated level of interoperability today?

There is very little interoperability today as documentation is mostly on paper and integration with data utilities is typically not expected. There is intense need for interoperability. The sector is committed to interoperability in emergency modules, but work on health information aspects depend on the local circumstances and thus are subject to variability. Reuse of the work in eHDSI, for internal use in case of large scale emergencies, is worth exploring further.


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4.2 Patient summaries Continuity of care per chronic patients Challenge Statement what is the problem we are trying to solve with patient summaries?

Accessing and presenting the Patient Summary of the patient to all care providers (GPs, specialists, social care givers) having an encounter with the patient for acute problems (which could be across borders as well) or management of his existing chronic condition

Stakeholders/Sponsors What do we do this for?

Chronic Disease Management programmes within countries.


GDPR


The patient summary data stored in national systems can be accessed by the GPs and Specialists (including across borders) during the care of the patient for chronic conditions or for acute problems of chronic disease patients.


Problems, medications, allergies, procedures, lab results, and if available care plans. Existence of care plans for the management of chronic conditions in the patient summary may give an idea about the current ongoing treatment goals set for the chronic patients and the related activities to all healthcare providers involved in the treatment of patients.


The patient summary information comes from the patient and from the healthcare and social care providers of the patient. The care providers (healthcare and social care) is responsible for the patient summary including the care plan. The patient is responsible for the data collected on the patient side regarding the management of his chronic conditions (such as device data). Each stakeholder is responsible for the data in their control. There is indication of the origin and provenance of the data included in patient summary. It is important that the patient summary reflects the most recent context of the patient including the current active treatment goals and activities.


The quality of the patient reported data in the patient summary especially the patient reported medical device data should be ensured. Allowing only CE marked medical devices could be a method to be followed. Apart from this, the patient summary retrieved from medical information systems (such as conditions, lab results, allergies, care plans etc) should be subject to EHR quality standards.

Value statement; What is the value proposition?

All of the healthcare and social care providers involved in the management of the chronic conditions of the patient have the same most recent medical context of the patient. This is also valid for the healthcare providers who needs to manage acute conditions of the patients suffering with chronic conditions. This is very valuable and essential to detect and avoid drug-drug, drug-disease, disease-drug interactions, polypharmacy problems, and also duplicate and clashing treatment options for chronic disease patients.


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An elderly patient suffering from diabetes visits his GP, and the specialists such as nephrologists, dietitian, ophthalmologist regularly for yearly control visits or upon referral by his GP as a part of his care plan. At these visits, all parties involved in the care of the patient will have the same view of patient summary. When the patient is being supported by social care workers visiting elderly, they will also have the chance to access his most recent treatment plan including his active medications and allergies via his patient summary. When the patient suffers from a severe cold during his visit to his son and grandchildren, he has to be hospitalized for risk of pneumonia. His existing treatments, including treatment goals and, medications are seen by the healthcare professionals treating his acute conditions, and his mediations have been adjusted accordingly.


Jointly by all the sources of patient summary.


There is the risk of data breach for each application accesses the patient summary which is used by healthcare or social care providers. Necessary user authentication, authorization, encryption, and audit mechanisms should be implemented and supported with physical security measures within healthcare settings. If the patient also accesses his patient summary including his care plan via his own devices, there is also risk of data breach especially when these devices get stolen. Data should be kept in encrypted in the devices, and necessary session expiration periods should be implemented.


C3-Cloud project implements similar scenarios in three regions including Spain, UK and Sweden. SRDC can demonstrate the use of patient summaries to support integrated care or chronic diseases in hypothetical scenarios.


Patients suffering from chronic conditions (at least 30% of European population).

Open Issues Inclusion of care plan (plan of care) sections to the patient summary.


Interoperability of patient summaries including regular sections such as conditions, allergies, medications are already improving. Share of plan of care sections in an interoperable manner might not be readily available currently.

4.3 Olympic Games – health care for Athletes, Olympic Family and Spectators The information below is based on a presentation provided by Mike Nuesbaum.


Olympic Healthcare Interoperability Initiative: “Advancing the seamless exchange and use of health information throughout the Olympic community” Offer comprehensive digital health services to athletes, the Olympic family and spectators. The mission of the Olympic Health Initiative is:” Advancing the seamless exchange and use of health information, using established international standards, to support an integrated medical


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services infrastructure at each Olympic Games site. The OHI network connects pre-Games person-specific healthcare information with information generated at Games time by Olympic and Host City service providers.”


The stakeholder of the Olympic Games ecosystem is complex comprizing the governments participating in the games, the donors, and companies, etc.


The objective of the Olympic Health Initiative is to ”Increase the efficiency and effectiveness of the Olympic Medical Services functional program through the integration of interoperable healthcare information technology

• Demonstrate to the world that the international adoption and implementation of standards-based interoperable healthcare information technology directly impacts:

• Better health of the “Olympic Population” (athletes, coaches/staff, volunteers, family & spectators)

• Improved health outcomes through availability of, and secure access to, appropriate information at the right place, audience and time

• Reduction of total time for diagnosis and treatment

• Reduction of waste of human and system resources

• Improved care coordination, quality, safety, efficiency, population health

Value proposition

• Promote an Olympic class Longitudinal Electronic Health Record to support a patient through the full Care Continuum

• Track athlete health, perhaps trended over some longer time periods

• Clinical data can be anonymized and made available to IOC/OCOG for Analytics & Planning

• Monitor and better respond to public health outbreaks

• Facilitate the retention of the medical and pharmacy patient records after the games, according to national law and industry best practice

• Ensured that prohibited or contra-indicated medications are not inadvertently administered by the OCOG medical team.

• Demonstrate commitment to innovation, to facilitate welcoming the world

• Enhance the quality and efficiency of care provided to all participants [reduced costs, increased safety, etc.]


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1) Athlete Cardiac Event: Twenty-four-year-old Jamaican athlete Tasha Morris collapsed on the track while competing in the Women’s 100 Meter event at the London2012 Olympic Games, showing symptoms of dizziness, light-headedness, and a pounding in the chest area. 2) Olympic Family Member GI Event: George Carson, the 56-year-old father of Canadian Olympic swimmer Brian Carson, exhibited an episode of acute abdominal pain while watching his son’s final heat in the 200 Meter Butterfly event at Rio2016 In both cases the Patient summary provides essential information from the medical history of the patients.


Managed by the organizational structure of the Olympic Committee and the host country. Specific companies manage parts of the ecosystem.



The IPS is only part of the information ecosystem for the Olympic Health Initiative. Medical Images and signals, previous encounters, and past lab results are relevant pieces of information.


The provenance and timeliness elements depend on the specific details of using the patient summary.

Quality assurance What are the quality standards components are subject to?

The relevant quality standards that apply to the component systems.


The information governance elements of the Olympic Healthcare Interoperability Initiative are very complex.

Risks – Security & Privacy GDPR and NIS are applicable here.


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What are the privacy and security requirements – what are the safeguards? Pilot projects and/or services Who has implemented patient summaries for this situation?

In planning.


Open Issues Anticipated interoperability maturity level What is the anticipated level of interoperability today?

• Leverage established international standards

• Content standards could include IPS, TCM, IDMP, XDS-I and more

• Leverage “Connectathon” & other testing events

• Focus on Olympic use cases across entire Olympic community

• Include technical, semantic & functional interoperability

• “Future proof” OHI implementation

4.4 Integrated Care: Frailty scores for Elderly Challenge Statement what is the problem we are trying to solve with patient summaries?

Patient summaries can play an important role within current standards tools that support the flow of information of a frail person on a health-illness trajectory, Patient summaries used well could help with the challenge of offering coordinated, holistic services when caring for frail elderly citizens. Initiatives are necessary to create an information infrastructure based on patient summaries for frail people to navigate their complex life. An augmented or extended patient summary could coordinate and orient the care and daily life of frail people.


We do this for the members of the health team of frail or prefrail people. We do this for the family and next of kin, as well as for all of us who wish to age with dignity supported by meaningful and empowering services.


(a) The patient summary can be linked to appropriate check lists adjusted to the knowledge and speciality profile of the person administering them, to assess the possible frailty condition of an elderly individual, in the GP office, an emergency room or at home. (b) The frailty or pre-frailty condition is indicated in the emergency patient summary.


Please consult in the appendix the story of John Doe.


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The envision extended and linked patient summary would operate in complex environment across jurisdictions. People of different level of literacy would have to consult, and act upon and potentially on it.


Health data records are captured, retained and conveyed in clinical or community information systems. The Patient summary is able identify Frailty or Pre-Frailty and link to the actual assessment tests.


The patient summary components involved do not change. The only clear requirement is embedding the patient summary where the condition of pre-frailty or frailty can be assessed and documented in a way that it can be reflected in the patient summary. Links to the actual tests performed is a plus.


The prefrailty or frailty information comes from specific tests administered by a health professional or even the family. Responsibility lays with the person administering it and test provider. The location and circumstances of the test need to be also captured as part of prevalence.


The quality standards that information on frailty needs to abide with are not yet defined.


The relevant information is governed by the source information systems providing the information.


Privacy and security requirements as well as safeguards depend on the setting that the patient summary extended with support for identification of frailty is operationalized.


There are no regions or communities that have implemented this patient summary approach to frailty.


With aging the number of citizens that are affected by frailty is rising.

Open Issues Globally recognized scores and classifications for describing frailty might be an issue. This is the same problem that there is in the current IPS specification for autonomy/invalidity.


Interoperability requirements are low. We need to be able to capture frailty as a condition in the patient summary. We also need to be able to capture the provenance of the information on frailty and possible link to the original information.

4.5 Patient and Family Empowerment: Medication List Reconciliation Challenge Statement what is the problem we are trying to solve with patient summaries?

Medication lists are hard to reconcile when multiple providers and health care facilities are involved.


We do this for the patients and their families to benefit from patient summaries.


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Patients and their families use patient summaries as an empowerment tool.


(1) Patients alone or supported by their family use a patient summary up to quality assure the medication list following discharge from the hospital. They are also able to add their own over the counter medication and review provenance information related to each item. (2) General practitioners (GPs) with support from the patients reconcile the medication section of the patient summary.


There are regulatory aspects related to the management of active prescriptions associated to medications and these are also relevant to the cross-border setting. Parmacovigilance and drug-to-drug interaction are also relevant.


Assuming that the patient summary is under full citizen control, data is captured from different sources along with provenance information. Patients and their family quality assure the information. In the case of cooperative use between the general practitioner and the patient the patient summary may be under GP control.


The main patient summary component involved is medication component of the patient summary. Possible extensions to be considered are links to external services and links to the source of individual items. The important addition proposed is adding the confirmation information.


Source and accountability of information relate to the source of data and the details of the scenario.


To our knowledge in the patient facing app care there are no specific quality standards. eStandards deliverable D2.3 provides some general guidance.


For the patient summary under control of the GP, governance is more clear. For the patient facing app case, the patient and his kin are responsible for the data.


In both cases examined there are the typical security and privacy guidelines to abide to.


Most of the patient summary services implemented include a medication summary component. Reconciliation by the GP has been implemented in Denmark. Reconciliation and confirmation by the patient is supported implicitly by patient facing apps. To our knowledge, using the patient as a hub for the bidirectional exchange of information is rare.


The anticipated impact of engaging the patient with their patient summary and their medication in particular is high.


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Open Issues Whether the medication component of the patient summary can serve as the ”source of truth” for an uptodate medication list is up for debate. One may argue that we can have different medication lists depending on their purposes. Then, which one should we select for the patient summary? There are a lot of additional issues in this scenario: where data come from; the different menaings of the mediaction lists; how the medication summary components are built;...etcetera...


The maturity level is medium. openMedicine addressed the equivocal identification of medicine.

4.6 Prevention: ESH Hypertension App – extending with Patient Summary data On June 16, the European Society of Hypertension signed an agreement with Trillium II, to establish a joint

working group to extend the IPS for use in the hypertension App the society has endorsed.13

According to the website14 of the company, ESH Care solution aims to help hypertensive patients to maintain

their disease under control. Additionally, under the user´s discretion and respecting privacy, it is possible to

contribute to the collection of Big Data in an auxologic scientific field, necessary to study the population

affected by this disease.

• Certification: scientific validation guaranteed by the experts in the sector.

• Presence: it records the anthropometric values and the blood pressure of patients, linked and

unlinked users.

• Communication: it allows your treating physician to be always alert and informed.

• Integration: allows it to be extended with the YouCare emergency system and the “Health Meeters”

framework of communication and health management for a complete analysis and EHR.

The intent of this use case, is to extend the ESH Care app with the patient summary data set adapted to meet

the needs of monitoring hypertension.

The patient will be able to add to the ESH Care specific components or building blocks of the patient summary,

including specific problems, medications, allergies, etc. When needed, this information will be shared with a

physician or specialist. The physician will be able to update the information. Overtime, we expect that the

patient summary data will be able to improve the quality and interpretation of the data collected by the app.

From a technical point of view, we can anticipate two optimizations:

(a) the possibility to import a patient summary from the eHDSI

(b) the possibility to connect and certify with a regional platform as the TicSalud in Catalunia or SPMS in

Portugal.

4.6.1 Patient Summary Components for the Hypertension App The components of the hypertension up are selected from the HL7 and CEN IPS project. The methodology

for elaborating the data sets is based on the eStandards guidance in 3.5. These are:

13 https://www.youtube.com/watch?v=jnhKqN-tOrU ; https://www.youtube.com/watch?v=hcHpHSB5O_4

14 http://www.youco.eu/en/soluzioni/esh-care/

https://www.youtube.com/watch?v=jnhKqN-tOrU

https://www.youtube.com/watch?v=hcHpHSB5O_4

http://www.youco.eu/en/soluzioni/esh-care/


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a) Essential

a) Problem List

b) Allergy and Intolerance

c) Medication

d) Medical Devices

b) Required for additional insights

a) History of Procedures

b) Diagnostic Results

c) Nice to have

a) Immunizations

b) Vital Signs

c) Social History

d) Family History

Figure 3: The ESH Care app, endorsed by the European Society of Hypertension.

4.6.2 Template for extension of the ESH app


Accessing and presenting the Patient Summary of a pre- or hypertensive patient on the ESH CARE app as a health id or profile in two levels


ESH – the European Society of Hypetension recommends an app to its members which simplify the doctor / patient relationship


GDPR; Merging medical data with patient generated data; what to do with patient generated data.


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The patient summary data are stored by the doctor in their platform and accessed through the app.


Problems medication allergies and devices – even these are presented in two layers. See § Fejl! Henvisningskilde ikke fundet. above for further details.


The patient summary information comes from the patient and the doctor. The doctor is responsible for the patient summary. The patient is responsible collected on the patient side. Each stakeholder is responsible for the data in their control. The is indication of the origin and provenance of the patient summary


Data in the App need to be quality assured and provenance must be maintained for each component.


Patients are mobile, and their health data is available no matter where they are.


The patient at risk of hypertension, visits the doctor. The doctor recommends the ESH care app. Patient gets the app enters the data manually, or connects it to the doctor’s system or the regional infrastructure, then Data start coming in.


The information must be jointly governed

Risks – Security & Privacy What are the privacy and security requirements – what are the safeguards

There is the risk of breaking through the app. There is the risk of breaking through the doctor’s system


None to our knowledge, we hope that TicSalut or Portugal may be interested in implementing this demonstrator. Other members of the community may show interest as well.


The number of people with hypertension.

Open Issues No known open issues


There is a lot of work underway in this area spanning from medical device interoperability, health record structure and functional descriptions. Implemented interoperability varies, but there are opportunities for mHealth assessement and validation in specific regions.


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4.7 WHO International Certificate of Vaccination or Prophylaxis (ICVP) (aka Yellow card) –

Vaccination Record Challenge Statement what is the problem we are trying to solve with patient summaries?

Assure that during holiday or business travels all the requirements about Vaccination or Prophylaxis have been fulfilled, also for diseases which either do not exist or have become rare in the country in which they live. Provide a globally understandable mechanism to inform care providers about the immunization status of a patient, avoiding unnecessary vaccinations and /or medications (e.g. Immunoglobulin therapies).


Travellers; Public health centres; WHO.


International Health Regulations (IHR) is intended to help countries review and, if necessary, strengthen their ability to detect, assess and respond to public health events. In particular, ICVP is conceived to improve global health security and prevent public health crises. Facilitate the exchange of personal immunization information while travelling.


Before leaving for Mauritania, John took a single dose of yellow fever vaccine; his vaccination record, as well as his patient summary, were updated. Customs and border control at the airport electronically check that all the required vaccinations have been performed. During the stay in Mauritania John has a little injury. The tourist doctor applied few stitches, but after having consulted the electronic ICVP (extracted from the John’s Patient Summary) he realized that no Immunoglobulins were needed.


International Health Regulations (2005)


The capture and the retain process is jurisdictional dependent; however, in most cases the ICVP is delivered by public health centres. ICVP information is recorded into a paper document held by the patient and shared on request.

Patient summary components

What are the relevant patient summary components? How are they constrained or extended? What are the data set requirements?

Relevant patient summary components: Immunization Other related information not part of the current ICVP: drug allergies; current medications. Information captured: Name of the patient and Passport number or travel document number; sex; date of birth; nationality


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For the certification of profilaxis or vaccination against a disease or condition:

• Vaccine or prophylaxis, including date and attester

• Manufacturer and batch no. of vaccine or prophylaxis, including Validity period and Official stamp of the administering centre

For other vaccinations

• Disease targeted, date and Manufacturer, brand name and batch no. of vaccine; Next booster (date); Official stamp and signature

Constraints: The ICVP certificate is valid only if the vaccine or prophylaxis used has been approved by the World Health Organization ICVP shall be fully completed in English or in French and optionally in another language,


Information usually comes from public health centres that administered the vaccine, that are also responsible for this information. (”clinician, who shall be a medical practitioner or other authorized health worker, supervising the administration of the vaccine or prophylaxis”). ICVPs are issued on request.


Signing physician is responsible for the quality of information provided.


WHO is responsible for governing this data set.


Currently is a paper based process, the safe maintenance of ICVP information is in charge of the patient.

Pilot projects and/or services No known patient summaries implementation for this situation. Anticipated impact How many people or organizations will be impacted?

Potentially all travellers and countries.

Open Issues Anticipated interoperability maturity level What is the anticipated level of interoperability today?

Interoperability is achieved using a common template for vaccinations with textual data in English or French.

4.8 Medical Ids – Extending in Case of Emergency (ICE)15 Challenge Statement what is the problem we are trying to solve with patient summaries?

Provide critical medical information to paramedics in case of emergency.

15 https://en.wikipedia.org/wiki/In_Case_of_Emergency


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In Case of Emergency (ICE) enables first responders, such as paramedics, firefighters, and police officers, and hospital personnel, to contact the next of kin based on information on the phone of the patient.


The ICE campaign started in May 2005 by Bob Brotchie of the East Anglia Ambulance Service in the UK. After iOS8, iPhone comes with a health app, that stores medical contacts as well as key medical data, including indication of being an organ donor. The information content is an extension of the patient summary as provided in IPS


1) Jo has a rare disease and would like to be able to use her phone for support when away from home. She sat with her GP and filled in the Medical ID on her phone, she also included information of her doctor and family phones. An accident occurred that left her unconscious. The paramedics could use the phone to find critical information about Jo and her next of kin. 2) Mary is an android phone user, she is also likes ICE and downloaded an app that functions as screen saver to her phone. 3) Suzan is a rare disease patient, she wears a bracelet with a QR code. A paramedic reading the QR code can access her patient summary online.


This use of the patient summary is completely under citizen control. The patient may request to download their data or seek support from their GP to complete the data on the phone, but the information listed on the phone or online typically under the owner’s control.


Typically, data is entered by the owner of the phone, who controls and quality assures the information. In more advanced interoperability cases we may assume that the patient requests to receive their patient summary in an well-known format and then uploads and imports the information to the phone.


Medications Allergies & Reactions Date of birth Medical Notes Medical Conditions Photo Organ Donor Emergency contact Blood type Weight Height


Provenance and timeliness are relevant when the medical information comes from trusted sources other than the patient e.g. a formal patient summary provided by the GP. The information on data, author, etc. needs to be included. Noted however, that this functionality is not available in any of the apps we have considered.


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The quality of the information depends on the source and may vary. There are no well accepted standards for that.


In the ICE case and its various extensions the patient governs the information.


Well known security and privacy risk apply here.


The basic service is available in different forms, with varied functionality, in all well known app stores. It is native to the Apple iOS since v8.


Digitization of medicine and adoption of a data mentality will change the current status.

Open Issues Terminology licencing – use of standard terms - translation – integration to medical systems


The maturity level on interoperability currently low. Lack of trust is one of the contributing factors.

Figure 4: Screen shots of Medical Id on iPhone.

4.9 Last-Mile Use Case: When patients meet unfamiliar providers at point of care Challenge Statement what is the problem we are trying to solve with patient summaries?

Consumer presenting her Patient Summary to an unfamiliar provider at point of care.


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Consumers without usual source of care, uninsured or underinsured, chronically ill and in need of frequent encounters necessarily with unfamiliar providers; health insurance payers in public market;


Interoperability between consumer smartphone apps and diverse provider record systems, EHRs and practice-management systems


The consumer's PHR integrates patient summary data, which are manually entered by the consumer (e.g., allergies) and auto-populated from multiple EHR provider and payer sources (e.g., care plans).


Problems, medication, allergies, care plans, immunizations, imaging studies, lab results, family history, insurance coverage


This use case requires a solution for the credibility, trustworthiness and provenance of data exchanged between patient and unfamiliar provider at point of care so that both parties are protected from treatment errors and from malpractice liability. This use case also requires a solution for near real-time updating of patient and provider data so that both parties get the most useful and usable data possible under the circumstances.


This use case calls for an unprecedented method of quality assurance that continuously evaluates the trustworthiness of multi-type consumer data continuously integrated from multiple sources. Consensus across providers and technologists is needed about a method that assigns an unquestionably objective trustworthiness score to consumer data. Such a statistically defined data trust score would allow end users of consumer data to choose (and perhaps document) the basis for their healthcare decisions.

Value statement; What is the value proposition?

Consumers, particularly those coping with chronic conditions and those who are uninsured or underinsured, frequently encounter unfamiliar providers, who cannot access comprehensive, up to date consumer health information from their EHRs at point of care. This last-mile information supply problem aggravates the consumer's risk for needless treatment errors.


A patient current undergoing treatment for end stage renal disease is injured during a hurricane and brought to an emergency department of a local hospital. The ED cannot find patient information in its EHR system. The patient supplies information necessary for admission from a smartphone mobile app through a FHIR API to the ED's EHR.


Presumably, the information in a patient-held mobile app is owned by the patient and controlled by patient-conferred permissions.


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Risks – Security & Privacy What are the privacy and security requirements – what are the safeguards

The security and privacy risks, and the necessary safeguards, are no less for a consumer-controlled mobile smartphone app than those associated with the electronic health records which are data sources for the mobile app.


Prosocial Applications in the U.S.


All consumers who occasionally or often receives care from unfamiliar healthcare providers and all providers who occasionally or often delivers care to unfamiliar patients.

Open Issues As indicated above, provenance and timeliness, quality assurance, and interoperability.


This use case is readily amenable to leveraging of FHIR resources as the route to interoperability between consumer mobile app and provider EHR via FHIR APIs.


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4.10 Other scenarios of extending Patient summaries. There are several other scenarios of extending patient summaries that we have considered. Among these:

• patient summaries attached to a medical appointment. This scenario is linked to a workshop we

held at MedInfo2017 it has not been processed yet.

• Use of patient summaries in childen’s health and in particular school accidents, is something we will

explore in the next months. Trillium-II is currently working on a collaboration agreement with the

MOCHA project on European policy issues related to children health. A workshop has been

submitted at MIE2018 (www.mie2018.org) with participation of ECDC (see appendix). MOCHA has

shared with Trillium-II use cases they have developed where digital health technology could play an

important role. For example, the school maintains the patient summary in cooperation with the

family GP. In case of a school accident the information is used to assure safe care and correct

intervention my first responders. This ongoing collaboration will no doubt result in additional

situations of child health where patient summaries have an important role to play.

• Patient summaries in medical tourism or second opinion: standard health data in the patient

summary are useful when seeking medical care abroad or externally to the home health system.

• Patient summaries can be useful also in the case of stroke rehabilitation. Preliminary information has

been collected in the context of a workshop held in cooperation with the European Society of

Cardiology but has not been processed yet.

• Patient summaries associated with the automotive industry could have a role to play in case of car

accidents. From April 2018, with the eCall regulation, all new cars in Europe will have the ability to

connect to the GSM network16.

16 https://ec.europa.eu/digital-single-market/en/news/ecall-all-new-cars-april-2018

http://www.mie2018.org/


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5 Prioritization of Patient Summary Use Cases Starting with the VALUeHealth criteria in the appendix the following assessment table was prepared. The aim

of this table is to guide the evaluation of the different scenarios presented in the previous section and solicit

early commitment of partners to engage in further refinement and elaboration (WP3), Promotion and

training (WP4), reflection on governance and standards (WP5), Demonstration evaluation (WP6),

Dissemination and competition (WP7).

Assessment of Use Case Scenario For extended use of patient summaries

Use Case ID: Filled by:

Use Case Name: Comment

Impact on patient care Moderate 1 – 2 – 3- 4 -5 High

Impact on health systems & services

Moderate 1 – 2 – 3- 4 High

Impact on Health IT alignment Moderate 1 – 2 – 3- 4 - 5High

Potential Scale Up – regions Moderate 1 – 2 – 3- 4- 5High

Potential to overcome barriers to adoption

Moderate 1 – 2 – 3- 4 -5High

Potential Scale Up – Member states

Moderate 1 – 2 – 3- 4 -5 High

Builds up on existing use cases Moderate 1 – 2 – 3- 4 -5 High

Builds up on existing components


Easy for your community to implement


Clarity of governance Moderate 1 – 2 – 3- 4 -5 High

Relevant to European Citizens Moderate 1 – 2 – 3- 4 -5 High

Patients and Citizens Can drive change


Security and Privacy Concerns addressed


Other Concerns Moderate 1 – 2 – 3- 4 -5 High

The next step involved the creation of an on online form, which was filled from all partners. When multiple

partners from one organization participated we took the average of the responses. An additional question

involved willingness to engage in implementation and evaluation. The full results appear in the appendix.

Below we present a prioritization of the use case scenarios based on the reported results.

Several partners are interested in demonstrating scenarios of extending the use of patient summaries.

From the results we can see that clearly at the top are: Vaccinations and Chronic Diseases with an impressive

number of partners interested in demonstrating similar extensions of the patient summary components.

They are followed closely with the emergency and disaster management and the hypertension app. In any

case, the hypertension app can be considered as a special case of the chronic disease management and

integrated care. On the other hand, vaccination is extremely important in child health, a topic we will be

exploring later this year in collaboration with the MOCHA project and ECDC. Finally, disaster medicine and

an real time simulation (exercise) for emergency response can offer the environment for exploring several

variations of the selected scenarios.


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Table 1: Prioritization of scenarios for extending the use of patient summaries. Red below has attracted higher rating, followed by gree and blue.

Scenario of Use for Patient Summaries

Interested in Demonstration: Strongly (interested)

General Rating

Rating amongst Interested

1. Emergency and Disaster Management: Evacuation camp and Field Hospital 5 (3) 3.17 3.8 Interested Organizations: HL7, IHE, GNOMON, SPMS (possibly), LISPA (Possibly) 2. Patient summaries Continuity of care for chronic patients: 8 (4) 3.75 3.75 Interested organizations: TicSalut, IHE, SRDC, GNOMON, theSmartEHR (possibly), SPMS (possibly), HL7 (possibly), LISPA (possibly) 3. Olympic Games: health care for Athletes, Olympic Family and Spectators 3 (2) 2.18 2.67 Interested organizations: HL7, IHE, GNOMON (possibly)

4. Integrated Care: Frailty scores for Elderly 7 (2) 3.08 3.57 Interested organizations: Ticsalut (Possibly), HL7, IHE, SRDC (Possibly), SPMS (Possibly), GNOMON (Possibly), LISPA (Possibly) 5. Patient and Family Empowerment: Medication List Reconciliation 5 (1) 2.75 3.2 Interested organizations: MedCom (Possibly), IHE, HL7 (Possibly), GNOMON (Possibly), LISPA (Possibly) 6. Prevention: ESH Hypertension App: extending with Patient Summary data 7 (5) 3.33 3.57 Interested organizations: TicSalut (Probably), HL7, IHE, Lux, SPMS, GNOMON, LISPA (Probably) 7. WHO International Certificate of Vaccination Or Prophylaxis (ICVP) (aka Yellow card)- Vaccination Record 7 (5) 3.58 3.83 Interested organizations: HL7, THL, IHE, Lux (Possibly), SPMS, GNOMON, LISPA (possibly)

8. Medical Ids: Extending In Case of Emergency (ICE) 5 (2) 3.17 3.4 Interested organizations: HL7, IHE, SRDC (possibly), SPMS (possibly), GNOMON (possibly) 9. Last-Mile Use Case: When patients meet unfamiliar providers at point of care 5 (2) 2.82 3.2 Interested organizations: HL7 (Possibly), IHE, GNOMON (Possibly), TheSmartPHR, LISPA (Possibly)

Along with the ratings, the members of the community were invited to offer their thoughts, with some

additional use case scenarios, they felt were important. These are:

a. Paediatric Patient Summary


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b. Secondary Use of Medical Data for Public Health purposes (Datathon?)

c. Infectious Disease Outbreak Response

d. Water sanitation and flood management

e. The Automobile industry is standardising driver and passenger information integrating also IoT related

health data to evaluate the driver capacity to drive. on a second hand, all cars will need to incorporate the i-

call feature for emergency information shipping to 112 in case of accidents. Patient summary data of the

Driver and passengers could be included in a connected car proof of concept.

f. Migrant data handling at the country of entrance which could act as country A (patient summary creator)

and send information to the country of residence for the legally approved migrants under international law.

in that use case WP3 may explore the needs to extend PS specifications with additional epidemiological data

g. Medical tourism is form of cross border healthcare operation. while medical procedures are not always

recognized as required medical procedures, nevertheless the use at least of PS information could reduce

adverse event during such practices and enhance quality of care for the patient. Usually healthcare providers

involved in such practice are certified by international independent bodies on their quality of services (JRC,

Temos, etc) making it realistic to include PS (or other) Healthcare data exchange possible.

Assuming adequate interest, the parties proposing these, and other use case scenarios will be invited to

translate their input to the basic Trillium-II template. The result will be presented in the project web site and

disseminated using the channels available to Trillium-II.

6 Ethical Issues This document mainly refers to the preparatory work for specifications by describing situational use of

patient summaries. The actual extensions of the operational use of patient summaries is beyond scope.

Hence no specific assessment on ethical issues related to the Use Case specifications was carried out.

However, since all the Use Cases related to the adoption of the IPS refer to the treatment of clinical sensitive

information, it is recommended that ethical aspects are thoroughly assessed when real services

implementation and operation are undertaken.

7 Summary This deliverable analysed the state of the art and developed a methodology for the high-level description of

use case scenarios for extending the operational use of patient summaries. A first set of use case scenarios

were described, evaluated, and prioritized, gathering commitments to validate from the consortium

partners. At the same time, we reached out to our community to explore synergies for further refinement of

this work. In the next months, these use cases will be presented in the project website, along with additional

use cases that may be contributed from the community. Work in follow-up task 3.2 will analyse the priority

use cases in more detail, considering also requests from scenarios or story boards to be developed in the

context of validation activities, demonstration pilots, and dissemination events.


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Appendix: VALUEeHealth full list of criteria

This is the list of criteria developed by the VALUEeHealth project. They will be considered only as an

important reference to elaborate on, by the work of Trillium-II.

• impact on patient care

o Growing health service cost (e.g. ageing population)

o Care plans rely significantly upon shared (integrated) care

o Helps to incorporate self-management and mobile apps / devices

o Helps shift care from an acute to home setting

o High prevalence and high cost (long-term) condition

o Current practice is variable, poorly co-ordinated or includes unnecessary care interventions

o Patient safety concerns that could be improved (e.g. safer prescribing)

o Connects centres treating rare diseases

o Contributes to preventive measures and health promotion

• Potential impact on health systems and services

o A recognised priority for improved outcomes

o Likely to avoid hospital admissions or prolonged lengths of stay

o Likely to improve health service efficiency

o Likely to reduce healthcare costs and/or optimise resource utilisation

o Helps to grow capacity to cope with increasing healthcare demand

o Likely to reduce test duplications or treatment delays

o Likely to improve equity of access to health services

o Enables better evidence for service planning

• Policy alignment

o Aligns with clinical research priorities e.g. rare diseases, personalised medicine

o Stimulates growth in the health ICT market e.g. for devices, for secure cloud solutions, for big

data analytics

o Helps Member States to tackle societal priorities on health service quality, safety and capacity

o Facilitates better integration of health and social care

o Offers a dual benefit to within border and cross-border care

o Supports public health and HTA programmes e.g. evidence on comparative effectiveness

o Contributes to healthcare quality monitoring e.g. to quality registers

o Generates income or reduces costs to other sectors

• Informatics and health ICT alignment

o Easily operationalised / put into practice

o Takes account of and makes good use of existing health ICT deployments and data

o Makes use of the early CEF building blocks

o Has expandability to support a cluster of related use cases

o Has reusability to underpin other use cases

• Likely to be successful at scaling up

o Has been undertaken successfully before in at least one Member State or Region

o Builds on components or similar use cases that are already working well

o Few known barriers to adoption

o Helps to avoid or mitigate well-recognised barriers to information sharing

o Societally acceptable e.g. confidentiality of data, in-home privacy, dignity


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o Stakeholders who benefit the most are in a position to support and drive the change e.g.

patient groups

o Delivers benefit to multiple stakeholder, who will align to support adoption

o Scales up existing cross-border initiatives between countries

• European dimension

o Supports cross border emergency care

o Supports cross-border planned care

o Enables comparative benchmarking

o Enables alignment of care pathways and standards of care across Europe

o Makes the case for the planned CEF services

o Contributes guidance and a business model for future CEF services

o Helps to detect and/or prevent fraud, especially in cross-border services

• Easier for VALUeHEALTH

o Good availability of data to underpin the business modelling

o Good availability of experts to advise on organisational change management and incentives

o Relevant and well-aligned standards and products to enable accurate costing of adoption

o Can be specified to a detail sufficient to develop the business case

o Build on existing European use cases e.g. Antilope: medication, radiology, laboratory, patient

summary, referral and discharge reporting, participatory healthcare, telemonitoring,

multidisciplinary consultation e.g. SHN heart failure shared care

o Specific returns on investment can be projected, within a reasonable time frame.


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8 Appendix: Supporting Information on Events

8.1 Conference Panel: AgeingFit 2017, Lille February 2-3, 2017 AgeingFit is the first European business convention dedicated to innovation in the healthy ageing sector,

gathering all actors in the innovation cycle from research to market, along with the key players in regulation

and evaluation with the objective to identify tomorrow’s market needs and promote today’s innovative

products and services for the Senior Market. AgeingFit 2017 was organized in Lille France, and Catherine

Chronaki participated in the panel: ”Preventive healthcare: exploring big data’s rising role in active and

healthy ageing”: moderated by Richard Bowden, Directeur Général, Assess Patients, along with Robert David,

president AETERNAM, Stefaan De Kezel, director for Innovation & Smart Synergies at Ageas and Francis

Brichet, responsible for health at Coreye. Here is a brief description of the session:” As health costs increase,

special attention is now being paid to preventive care and the reduction in the number of hospital

readmissions, hence the importance of using "Big Data" technologies. What are the impacts and opportunities

of using these data in the aging market? Can they be used to encourage people to maintain their health? Can

they be shared with mutuals and insurance companies? What security and ethical challenges imply the

collection of such data? Our stakeholders will share questions about the use of Big Datas in health”

geingFit is organized by Eurasanté, Nutrition

Health Longevity (NHL) Cluster, and FRANCE

SILVER ÉCO. Eurasante is a non-profit agency

engaged in technology transfer and business

evelopment of companies and start-ups in Life

Sciences sectors in Northern France. The regional

network includes near 1000 organizations working in the field of Life Sciences, Nutrition and Healthcare.

Eurasante assists French and foreign companies interested in developing their activities or setting-up a

business in Northern France. Eurasante provides many services such as access to public aids, find offices,

administrative formalities, recruitment assistance, market studies

Nutrition Health Longevity (NHL) Cluster is the only French cluster to combine nutrition, biotechnology and

health. Its objective is to gather and support players from the health and food sectors in designing,

developing and financing the products and processes of the future. The cluster focuses on the fields of the

prevention and treatment of life-style related diseases such as metabolic and cardiovascular pathologies,

neurodegenerative diseases and intestinal bowel diseases. In the Silver Economy and due to the increase in

life expectancy, the NHL cluster innovates through two axes: Nutritional/food advances for seniors and

diagnostic and therapeutic solutions related to pathologies associated with ageing. For example, NHL cluster

works on innovative transdisciplinary strategies to diagnose and treat Alzheimer’s disease. The cluster’s

network is composed of over 100 organisations including world leading companies in the fields of agro-food,

ingredients, nutrition, biotechnology, pharmaceuticals and health, as well as internationally recognised key

opinion leaders and practitioners.

FRANCE SILVER ÉCO exists FRANCE SILVER ÉCO since 2009 at the initiative of the Economy, Finances and

Employment Ministry with the Health Ministry support. The association represents the unifying actor of the

healthy ageing sector: Its gathers and animates the national ecosystem. Its ambitions: (a) To facilitate the

innovative industry development and a qualitative economy in line with the healthy ageing sector needs. (b)

To enforce the Silver Economy and settle a references portfolio for the prevention of the dependence in

France. (c) To sustain the professionalisation of the public purchases department and develop the innovative

public purchase strategies.


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Figure 5: Session on Big Data for prevention in Aging Fit 2017, Lille, Feb 2, 2017

8.2 European Commission Workshop: International Patient Summary - Bridging projects &

Initiatives, eHealth, Wellbeing & Ageing, EC DG CONNECT, Beaulieu 33, Room 0/54,

Brussels Thursday February 9, 2017; 9:00am to 17:00pm

8.2.1 Scope and objectives The medical history and core health data would be readily accessible for safe and quality unplanned care.

Links to additional information would help navigate across health and social care

systems to support self-care and connected health.

Data portability and patient access legislation places the individual at the center of

their health data. Interoperability standards intend to connect data sources at

lower cost, replicate good practices, and build trust. Trust is what will increase

adoption and maximize the return of investments in digital health. Thus, sharing

comprehensive ‘live’ standards and educating the workforce will help us tap on

the value of health data. This is the notion of standards as infrastructure for

innovation and driver of the digital single market.

This workshop is an information sharing initiative among organizations, associations and projects engaged in

developing, implementing, testing and maintaining patient summaries within systems and apps. Its main

objective is to share a common vision and best practices for the patient summary, in community of innovation

that reinforces the co-creating role of SDOs, associations, competence centers, and other initiatives. An

important step in that respect is to capture the current landscape of Patient Summary initiatives and start a

constructive dialog to identify gaps, create synergies, and set up shared priorities.

The Trillium Bridge project key recommendation offers a starting point for positioning the patient summary

as a social right and a common good. “Advance an International Patient Summary (IPS) standard to enable

people to access & share their health information for emergency or unplanned care anywhere and as needed.

At minimum the IPS should include immunizations, allergies, medications, clinical problems, past operations

and implants.” Supporting open tools and shared ready to use resources should lower the cost of standards

adoption and advance interoperability adoption. Therefore, we envision the patient summary as a set of

expandable building blocks. Building blocks are associated with health data models to accommodate


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structured and unstructured data. A tooling marketplace accelerates not only the process of development,

and maintenance, but also validation and interoperability testing.

After sharing experience and reviewing current solutions from member states and the industry, we will work

in breakout group identify uses of the patient summary that go beyond unplanned or emergency care. We

will work on the benefits of patient summaries with high precision for individuals and health professionals.

We will also explore the value of aggregating patient summaries to support the community in making

decisions on health of populations in emergency or disaster setting.

8.2.2 Invited Initiatives eStandards, Trillium II, VeH, CEN IPS project, EU-US-eHealth Work, HL7 International Patient Summary

project, EURACARE Flight & Shelter, eHealth Stakeholders group, S&I subgroup.


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Figure 6: Program of Patient summary worshop organized on February 7, 2017

Preliminary Agenda 8:30 Arrival - Registrations 9:00 Welcome, Roundtable of introductions, objectives of the workshop Gerald Cultot, Policy Officer, DG Connect

9:15 Digital Patient Summary in the Wallet: Bridging the gap from Strategic Intend to Social Impact. Henrique Martins, SPMS

9:30 Landscape to patient summary initiatives: the interplay of standardization and projects: Catherine Chronaki

9:45 Patient Summaries in Europe and beyond: best practices, gaps, and opportunities Intended Outcome: Current landscape of patient summary initiatives. What are the best practices? Where can we share resources? What are the gaps? What is the role of eHealth Stakeholders in adoption?

Chairperson: C. Chronaki; Panelists: Francois Macary (France), Vanja Pajic (Croatia), Ariadna Rius Soler (Catalunia), Michael Noehammer (Austrian Chamber of Physicians), Kai Heitmann (Germany), Eirik Nikolai Arnesen (Norwegian Medical Association), Jamie Ferguson (KP, US), Jan Petersen (MedCom, Dk), Daisy Smet (Luxemburg)

11:00 Coffee Break - Demonstration of different approaches and tools for patient summaries National Patient Portal (Jan, MedCom, Denmark), eHealth SOS mobile app (ADI, UK), Patient Summary Wallet (SPMS), Nurge Maggie (Omnimicro, DE), Decipher-GNOMON (Kostis Kaggelidis, GR), Decipher-Camelot/Nextage (Curso Basso, IT)

12:00 Commentary: WHO and eHealth Stakeholders Group S&I team members Joan Dzenowagis, Elinaz Mahdavy, Carole Rouaud

Rapporteurs: Mie Matthiesen, Charles Lowe, Linda Keane

13:00 Extending the use of Patient Summaries Chair: Luc Nicolas, Panelists: Harms, Harm-Bastian, Ting Shi, Michele Thonnet, Marcello Melgara

- emergency and disaster management - self-care - planned care - cooperative care

13:30 Crafting the Business Case: working lunch in Breakout Groups Intended Outcome: How the patient summary concept applies in other settings. Future prospects for cooperation among projects, associations, competence centers, and SDOS to raise awareness. Priorities and opportunities. Bridging the gap!

14:30: Report from breakout groups Rapporteurs from breakout groups: Mie Mathiessen (emergency and disaster management), Giorgio Cangioli (self-care), Stephen Kay (cooperative care), Laura Heermann (planned care)

15:00 Coffee Break

15:15 Revisiting Patient Summary Standardization Initiatives Intended Outcome: Engagement with initiatives in area of patient summary standardization Chair: Laura Heermann. Panelists: Stephen Kay, Giorgio Cangioli, Rob Hausam, Catherine Chronaki

- eStandards Roadmap: toward cooperative standards development - Oslo Declaration – moving forward - Processes and products of cooperation in CEN IPS and HL7 IPS projects - Looking into the future: supporting new uses of the patient summary

Commentary: Eirik Arnessen, Rachelle Blake, Linda Keane Rapporteurs: Charles Lowe, Mie Matthiesen

16:45 Next Steps towards a Community for the practice of innovation in Digital Health, C. Chronaki

17:00 End-of-Meeting


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8.2.3 Event Report: International Patient Summary Workshop - Bridging projects & Initiatives

Think of the patient summary as a window to a person’s medical history and health data with links to more

detailed information.

On 7 February 2017, the European Commission (the eHealth, Wellbeing and Aging Unit, DG Connect) hosted a concertation workshop of European projects and initiatives related to the International Patient Summary - policy, deployment, competencies, and standards.

The participants received the Patient Summary data set of the latest European Patient Summary Guideline endorsed by the 10th meeting of the eHealth Network on November 23, 2016.

Policy officer Gerald Cultot, DG Connect, welcomed the 35 experts from 15 states in Europe, the United States and China. Highlighting the importance of the data economy, he invited participants to respond to the Public Consultation on Building the European data economy, open until the 26th of April 2017, considering data access, portability, and free flow of data.

Then he introduced five questions to be addressed by the workshop:

a) What is the current landscape of patient summaries in Europe and beyond? b) What is the vision for where we should go next? c) How do we bridge the gap between what we have and what want to achieve? d) Who are the stakeholders that need to be on the table? e) What are the next actions?

Patient at the center

Henrique Martins, President of the eHealth competence center of the Ministry of Health in Portugal, inspired

the participants with his opening speech entitled "Digital Patient Summary in the Wallet: Bridging the gap

from strategic intend to social impact".

Observing that today health data are dispersed, with national or regional government-led electronic health

record projects and ad hoc personal health records controlled by the patient, Henrique stressed that we need

to bring the pieces together. We need to place the patient at the center allowing the addition of personal

'stuff'; 'my Patient summary data' next to the health professionals' data.

The Portuguese approach - My SNS Carteira (stands for 'patient summary in your pocket') - focusses on

portability and tailorability so that patients control and can move their own data.

In the end, we can live with some ambiguity, Henrique points out: "Let the patients help build their own

patient summaries so that it makes sense to them, rather than aim for an elusive complete picture of a

person's health."

Diverse patient summary implementation landscape

After a brief introduction of the updated European Patient Summary Guideline, patient summary initiatives

from France, Luxemburg, Croatia, Austria, Catalonia, Germany, Norway, Denmark, and the United States

painted a quite diverse patient summary implementation landscape. There were notable differences in the

scope, structure, assembly, validation, and frequency of update for patient summaries.

The ability of patients to access and actively contribute to the patient summary, although accepted and

mandated, is not there yet. But as a clear trend, more and more health apps provide specialized views,

windows to a persons' health data.

Jamie Ferguson, speaking for Kaiser Permanente in the United States, noted a shift from integrating the data

to sharing data through dedicated interfaces in ways that focus on usability and engagement.


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Representatives of national physician associations in Austria and Norway stressed the need for usability and

automatic assembly of the patient summary to reduce physician workload.

Emergency care, planned care, cooperative care and self-care

Following a demonstration of apps implementing notions of the patient summary in various contexts, in a

working lunch, breakout groups discussed extending the use of patient summaries beyond unscheduled or

unplanned care to address the needs of emergency care, planned care, cooperative care, and self-care.

Luc Nicolas (JAseHN project) asked how we get to the patient summary data and how we gain value, who

provides information and who controls it? Who is using it and for what purpose? Michele Thonnet

(VALUeHEALTH) pointed out that we move away for centralized management of data to a new way, in part

controlled by the patient. How can we make this work? With business models or laws? Laws take time, while

business models shared by all stakeholders can be a good starting point.

Ting Shi (Leiden University Clinic) notes that the patient summary needs to be self-motivating to the patient

and offer interim results of self-care. However, people are not the same and their motivations are different.

Harm-Bastian Harms (European Assistance team for Citizens in Areas of Evacuation EURACARE) requested

that we focus on solutions to real problems. We need to make the data available where needed.

Rachelle Blake (EU-US eHealth at Work lead) highlighted the need for measurable, achievable competencies

to ensure that we have mechanisms to contribute to a skilled healthcare workforce, supporting integration

of the patient summary in eHealth work throughout the European Union and globally.

Patient summary standardisation initiatives

In the next session, patient summary standardisation initiatives, Catherine Chronaki, explained the vision of

the digital health compass in eStandards that builds on cooperative standards development to address the

needs of health systems, consumers, the workforce, and the eHealth Market.

Then, Robert Hausam (US ONC, HL7 IPS project lead) reported on the principles agreed in Oslo, by the HL7

and CEN TC251 IPS project teams to create a single common International Patient Summary (IPS) standard

that is implementable, global, sustainable, extensible and open.

Giorgio Cangioli (CEN TC251 IPS project team, HL7 IPS co-lead) reported on the standardization progress

highlighting the complementary nature of the project, aiming in the near term to a minimal and non-

exhaustive patient summary that is specialty agnostic, condition-independent but readily usable and

extensible by clinicians.

Stephen Kay (CEN TC251 IPS Project lead) revisited the metaphor of the patient summary as a window to a

patients' health data, saying that "the window has to be positioned, resized and fit for purpose so that it can

pick out all of the relevant bits of the patient data, not just one narrow aspect. If the patient summary is the

eyes, then standardization is helping frame and focus the picture." He moved on to underline that "the

international patient summary has to be focused, otherwise it won't be useful. For that to happen, agreement

on the data needs to be reached. How data will be transported is a secondary issue."

Summary of the Breakout session on ‘Cooperative Care’ in relation to PS by Stephen Kay and Michele Thonnet

‘Cooperative care’ is a relatively unusual term applied to healthcare. Where it is used, it has the connotation

of a social system that includes clinicians, family and the patient, and by extension the care accessible in the

home setting. Cooperative Care relates closely to ‘continuity of care’ which is patient centric and would

involve multiple stakeholders across settings and over time. ‘Cooperation’ also implies a way of working, of

agreements, and therefore relates to the coordination of care, and this is typically an organisational

perspective (e.g. care providers).

How it relates to the Patient Summary concept and even more to the IPS work is unclear. Cooperative care

as described above suggests ‘planned care’ rather than ‘unplanned care’ scenarios. It does not conjure up


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the idea of cross-border applications. The health data available is likely to be a certain static view extracted

from the person’s total health record and in this sense, it may be regarded as a form of ‘summary’. Different

views of the patient’s health data might be required by different members of an extended team, and it might

be seen as a communication/coordination tool. The patient may be able to exercise control of who sees

what and track who has seen what, but it is unknown as to how popular these functions would be in practice.

There is a real danger that the ‘Patient Summary’ concept is extended so it becomes diluted, derailed and

effectively useless as a descriptive term. It should not be used to cover everything, and it is likely that there

are multiple ‘summaries’ in existence at any one time for a single person, each containing a particular

fragment of the whole (acknowledging that these may overlap, be inconsistent, and dated). Rather we would

encourage projects, such as IPS, to consider how to focus on its key strengths and particular use cases,

permitting reuse only in careful, meaningful and controlled ways to ensure safety, friendless and efficiency.

Whereas the ‘window metaphor’ is valuable, extending it to include ‘dashboards’ etc. is a mistake; the data

within the Patient Summary is always more important than the apps, tools and systems that seek to share

and present it in a usable and useful way.”

Need for shared vision

The closing discussion acknowledged once again the fragmented landscape and the need of a shared vision

to focus our efforts. Joan Dzenowagis (World Health Organisation, Geneva), reaffirmed the interest of WHO

to explore the patient summary as a social good, and proposed the formation of a task force to move us

forward. Gerald Cultot (DG Connect) closed the session noting that workshop was timely and necessary and

suggested a follow-up within the next six months. A white paper under preparation will capture the results

of the meeting.

8.2.4 Workshop Participants • Mie Hjorth Matthiesen, Denmark, MedCom, Trillium-II Project

• Giorgio Cangioli, Italy, HL7 Foundation, eStandards & Trillium II Project

• Jamie Ferguson, United States, Kaiser Permanente, Trillium-II Project

• Heermann Langford, United States, HSPC, Trillium-II Project

• Kai Heitmann, Germany, HL7 Foundation, Trillium-II Project

• Steven Kay, UK, CEN IPS Project

• Joan Dzenowagis, Switzerland, WHO eHealth Unit

• Tin Shi, Leiden University, various self Care projects

• Arlete Monteiro, Portugal, SPMS, eStandards and Trillum-II Project

• Cristiana Maia, Portugal, SPMS, eStandards and Trillum-II Project

• Vardasca, Portugal, SPMS, eStandards and Trillum-II Project

• Tomé Botelho, Portugal, SPMS, eStandards and Trillum-II Project

• Rúben Mahdavy, Personal Healthcare Alliance, eHealth Stakeholders Group

• Michael Noehammer, Austrian Chamber of Physicians

• Harms-Bastian Harms, Austria, EUROCARE Flight and Shelter

• Eirik Nikolai Arnesen, Norway, Norwegian, Medical Association

• Linda Byrne, Ireland, Irish Medical Society, JAseHN Project

• Luc Nicolas, Belgium, JAseHN Project

• Kostis Kangelidis, Greece, GNOMON, Trillium II project

• Jan Petersen, Denmark, Trillium-II Project

• Charles Lowe, UK, ADI, Trillium-II Project

• Curso Basso, Italy, Decipher Project Demonstrator

• Rachelle Blake, Germany,

• Angel Blake, Germany,

• Robert Hausam, ONC, HL7 IPS Project

• Marcello Melgara, Value eHealth Project

• Michael Sprenger, NICTIZ, JAseHN Project

• Jane Millar, SNOMED Internatonal


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• Michelle Thonnet, MoH France, JAseHN Project

• Catherine Chronaki, HL7 Foundation, eStandards, Trillium-II, eHealth Stakeholder Group

• Carole Rouaud, CPME, eHealth Stakeholder Group

• Terje Peetso, DG Connect, European Commission

• Gerald Cultot, DG Connect European Commission

• Licinio Kustra Mano, DG SANTE, European Commission

• Miguel González-Sancho, DG Connect, European Commission

• Carmen LaPlaza Santos, DG Connect, European Commission

8.2.5 Presentation slides: • Objectives of the workshop, Gerald Cultot, Policy Officer, DG Connect, European Commission

• Digital Patient Summary in the Wallet: Bridging the gap from Strategic Intend to Social Impact, Henrique Martins, SPMS

• Landscape to patient summary initiatives: the interplay of standardisation and projects, Catherine Chronaki, HL7 Europe

• Patient Summary Guidelines, Luc Nicolas, European JAseHN project

• Patient Summaries in France, Francois Macary, Phast Association, France

• Patient Summaries in Croatia, Vanja Pajic Croatian Health Insurance Fund, Croatia

• Patient Summaries in Catalunia, Ariadna Rius Soler, TicSalut, Spain

• Patient Summaries in Luxemburg, Daisy Smet & Heiko Zimmermann, eSante, Lx

• Patient Summaries in Austria, Michael Noehammer, Austrian Chamber of Physicians

• Emergency Patient Summaries in Germany, Kai Heitmann, HL7 Europe

• Patient Summaries in Denmark, Jan Petersen, MedCom

• Patient Summaries in Norway, Eirik Nikolai Arnesen, Norwegian Medical Association

• Emergency and disaster management, Harm-Bastian Harms, EURACARE Flight & Shelter

• Aligning VALUeHEALTH for 2020 and Beyond!, Marcello Melgara, European VALUeHEALTH project

• eStandards Roadmap: toward cooperative standards development, Catherine Chronaki, EU eStandards project

• Oslo Declaration, Statement of Agreement on the Patient Summary, Robert Hausam, Office of the National Coordinator for Health Information Technology, US Department of Health and Human Service

• Processes and products of cooperation in CEN IPS and HL7 IPS projects, Giorgio Cangioli, HL7

• Looking into the future, Stephen Kay, CEN International Patient Summary project team lead.

8.3 Stakeholder Workshop: European Modular Field Hospital (EUMFH) Antwerp, Belgium, March 6-8, 201717

On March 6-8, 2017 the EUMFH project-consortium hosted the stakeholder workshop as the kick-off for their

project. The team invited all relevant organisations to Antwerp, where they collectively worked around four

identified “pillars” in the Emergency Medical Team guidance (Governance, Healthcare, Logistics and Staff,

Training and Exercise). The first day of the workshop was dedicated to presentations by guiding organisations

as the World Health Organisations EMT-secretariat and the Directorate General ECHO of the European

Commission which presented the European Medical Corps. After this there were testimonies from 3

organisations that were recently verified by the World Health Organisation as Emergency Medical Team Type

2 (Japan and Russia) or Type 3 (Israel).

The project European Modular Field Hospital (EUMFH) aim is to explore the possibilities of establishing a

European level 3 Emergency Medical Team by using a joint effort from different European Member States

and to improve the medical capacity of the Union Civil Protection Mechanism.

The EUMFH project-consortium is consisting of:

• The Italian Civil Protection Department

• The Belgian Ministry of Health

• The Danish Emergency Management Agency

17 Material extracted from Workshop report. http://www.johanniter.de/die-johanniter/johanniter-unfall-hilfe/home/news/news-2017/join-by-the-first-meeting-of-the-european-modular-field-hospital-project/

http://ec.europa.eu/newsroom/document.cfm?doc_id=43496



















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• The Estonian Health Board

• The French DG for Civil Protection and Crisis Management

• The Romanian Ministry of Internal Affairs

• The Johanniter, Germany

• The University of Leipzig, Germany

• The Association of Slovak Samaritans

With the permanent support of:

• The Greek National Centre of Emergency Care

• The World Health Organisation

• Handicap International

The first day of the workshop was dedicated to information sharing. Therefore, we invited the EMT-

secretariat to provide an update on the latest developments in this field. The European Commission (DG

ECHO) provided an in depth view in the European Civil Protection Mechanism and the relevant proceedings

in the field of medical teams with a focus on the European Medical Corps. The Italian Civil Protection

Department explained the content of the EUMFH-project and after this there were 3 presentations from

Emergency Medical Teams that were recently verified by the EMT-secretariat as type 2 or type 3 facilities.

We wish to express our explicit thanks to all presenters, and especially to the delegations from Japan, Russia

and Israel.

Each of the four pillars Governance, Healthcare, Logistics and Staff, Training and Exercise were explored in

workshops.

In terms of Governance the following questions were explored in terms of assets for the EUMFH:

h) How will the asset be composed?

i) How will the EUMFH be activated?

j) Who is responsible during the deployment, in the field and in back-office, clinical and non-clinical?

k) Which certifications / verifications / classifications will be adhered to?

l) How will the facility be staffed?

m) Who will take the clinical responsibility?

n) How does the demobilisation-phase look like?

Particularly interesting is the question on clinical responsibility. Here is what the report notes:

“The discussion started with a view surgical care. There needs to be CLARITY: clear admission criteria with a focus on life and limb saving, especially in the beginning and with adherence to agreed protocols and remediation if there is non-adherence. There has to be clarity to make sure there is no (reason for) discussion. Examples of guidelines are: ICRC war surgery, Guidelines for management of limb injuries (these should cover up to 90% of the patients in SOD’s), NATO. We need to use the guidelines that are already published, and no reinvent the wheel. We know that the hospital will receive patients that can’t be taken care of in an EMT 1 or 2, and there has to be attention for CBRN, outbreak response, rehabilitation. Suggestion was to use a model of a Senior Medical Officer, with a deputy and a nursing manager. These are amongst others responsible for making up shift rosters and assignment of certain tasks (e.g. refill of used equipment, check of resuscitation equipment…). How to report critical incidents, near misses, framework of reacting to these events…”

On the Healthcare pillar, discussion was placed on the guidelines to be used, the level of healthcare provided,

patient documentation, reporting, pharmacopeia, and Referral of patients to / from the EUMFH.

Guidelines: National treatment protocols and their availability to the medical team on the field was

discussed, asking whether it would be possible to incorporate them in the EUMFH-SOPs along with existing


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guidelines from organisations as Doctors Without Borders, World Health Organisation, International

Committee of Red Cross, International Federation of Red Cross and Red Crescent Societies. A key question is

what set of guidelines should be used for what setting/context. The biggest question here is who will take

the responsibility to select these guidelines/SOP’s? How flexible can they be used? Who has authority to

change them e.g. during deployment? Should the guidelines be general? Or specific for procedure? Or should

a mixed model be used?

Level of healthcare provided: The level of care provided by the EUMFH should be in line with the context

and the local capacity, above minimum standards at all time and as high as reasonably possible. There should

be flexibility to adapt to the environment where the team is deployed. Keep the “Do no harm” principle

always in mind. The patient should always be referred to the most appropriate healthcare facility. Admission

of patients should be based on clear admission criteria. Is it acceptable that patients with for example spinal

injuries that require a lot of care, fill up the valuable intensive care beds, that could otherwise be used for

patients that would have much better outcome? Depending on the demands and the dynamics of the

response, considering what is possible in the local context (before the onset of the emergency). For these

ethical issues, EUMFH staff should be trained to understand that the level of care needs to be adapted to the

local context (and not only to the patient-load in the facility). It might be necessary to have an “ethical

committee” in the facility to discuss ethical decisions with colleagues. The specialities provided in the EUMFH

should be discussed in advance and could be dynamic over time (e.g. more focus on damage control surgery

during the first week, and plastic surgery later). At first there should be a focus on life- and limb saving care

e.g. ICU, anaesthesia, gynaecology, emergency, infection diseases, rehabilitation, surgery, orthopaedics,

paediatrics. Nursing and logistics requirements for every specialty should be considered equally and for

services not provided by the EUMFH as rehabilitation, the team should link up with other organisations.

Patient documentation. It is evident that there should be a patient record, fulfilling at least the minimum

expected for all involved. This is in the first place the patient him/herself, the team, the local health authority

etc. It includes general parts as well as specific parts for certain modules in the EUMFH as radiology, operating

theatre, laboratory etc. Consent from the patient when certain procedures are executed, should be recorded.

In the discussion it is noted that each patient should probably have a unique identifier and other patient data

collected should include a general overview of the past / present / future status of patients admitted, linked

to a general “EUMFH Log Book” with a patient tracking system recording also use of equipment and also

materials and medication, perhaps also telemedicine on patients. For logistical reasons there should be an

interlink between the stock of equipment / drugs and the documented use of it for a certain patient.

Reporting. Daily reports, end of mission reports and all other required should be provided to the relevant

and agreed stakeholders. These are amongst others the health authority, the patients, back-office, World

Health Organisation, ERCC, the different member states etc. There should be ethical considerations regarding

the disclosure of patient data (whom can these be shared with and whom not?). Patient confidentiality

should be ensured at all times. Birth- and death certificates and referral notes should be provided in a

procedure agreed upon with the local authority / coordination mechanisms. Hand-over notes should be

provided by all relevant staff at the end of their rotation or the mission, avoiding loss of information.

Pharmacopeia. There needs to be clarity if there will be one central pharmacy, providing all the medication

for the whole EUMFH, or will every team bring its own medication and use their own in their own part of the

hospital. There should be agreed well in advance what will be available and how it will get to the field.

Referral of patients to / from the EUMFH. Referral of patients can be required for different reasons: a patient

might need a level of care that cannot be provided by another facility and therefore need a transfer to the


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EUMFH. It could of course also be the other way around, where a patient of the EUMFH can find more

appropriate services elsewhere. Or there might be a need to make more beds available in the EUMFH and

therefore stable patients can be transferred to another facility. Question here is how transport will be

ensured? Will the EUMFH bring its own ambulance(s)? Or will the team hire local transport and improvise

where necessary? What documentation should be provided when referring a patient? How will the transfer

be coordinated?

The EMTS record developed by WHO is presented in the next section.

8.4 Health data requirements by WHO for Disaster and Emergency Medicine After a series of international expert workshops, WHO established the EMT initiative, an Emergency

Medical Team working group of the Global Health Cluster18. The working group developed a consensus

document entitled: ”Classification and minimum standards for foreign medical teams in sudden onset

disasters”19 and a minimum data set for emergency reporting20.

The team developed four forms:

a) Medical Record Tick-box: An example form to support recording and generating the minimum data set.

To generate the data, introduction of standardized tick-box on MR is recommended as a robust way to

improve the quality of documentation with only a limited workload. “Check all that apply” is the only

instruction needed to utilize this tick-box. To locate the tick box as one straight column is recommended

as that will decrease chance of omission (see Figure 8, Figure 9).

b) EMT tally sheet: An example form to support tallying by the EMT staff. Referring tick-box by the MR

allows staff to sum up the data by using tally marks. For EMTs who do not have MR with MDS tick-box,

physicians can utilize this form to count MDS after each consultation (see Figure 10). Electronic tally sheet

is available in Microsoft Excel. Not only tally table but statistics on the Daily Report Form and patient’s

individual electronic data become simultaneously obtainable using this approach.

c) EMT to EMTCC - A standard EMT MDS Daily Report Form: Team information should be provided

appropriately to allow EMTCC proper coordination. Team information should also be the best contact

information for EMTCC to reach individual patient’s medical information (Figure 11):

- [Daily summary]: This part catches the number of outpatients and newly admitted patients per

activity day. This setting is also applicable for every MDS statistics, but for the procedure (MDS No.25-

30) those will be counted on the day it was performed irrespective of when a patient was admitted.

- [Needs and Risks]: Essential free text reporting to EMTCC can be inserted. To help EMTCC categorize

the information and send it out to proper stakeholders, it is necessary to specify the number of

relevant issues in the reporting.

d) EMTCC to relevant stakeholders - Feedback form: Feedback from EMTCC to relevant stakeholders

including EMTs should be regularly provided. EMTCC should aggregate daily reports from EMTs efficiently

to induce a timely response (see Figure 12). To prompt aggregation, it is recommended to keep a similar

look between the Daily Report Form and the Feedback Form as that will effectively minimize workload

for data aggregation and sharing.

18 https://extranet.who.int/emt/ 19 https://extranet.who.int/emt/sites/default/files/fmt_guidelines_september2013.pdf 20 https://extranet.who.int/emt/sites/default/files/Minimum%20Data%20Set.pdf


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8.4.1 The data set The data set comprises 46 data items with 4 additional columns for context dependent items, organized in

four groups: 1) Age and Sex, 2) Disease, 3) Procedure and Outcome, and 4) Context. Other essential

information from the reporter was formatted in the reporting form as three categories: a) Team

Information, b) Daily Summary, c) Needs and Risks.

For Demographics, Age and Sex with specific mention of important age groups and pregnancy are

prioritized (Figure 7). Patient name, and identification, Occupation, and Triage category were initially

considered but eventually not included in this minimal data set.

Figure 7: Priority information on patient demographics.

Health events: information should support analysis of medical resources needed due to trauma demand, the

risk of epidemics and the requirements for potential special measures to be taken. Main discussions in this

category were related to how categorize trauma and how to express (list) infectious diseases. Additional

context dependent terms can be included (see Fejl! Henvisningskilde ikke fundet.). MDS will count every

applicable event on the list per each patient in way to facilitate the accuracy of the data collected.

The main goals in measuring trauma are the coordination of appropriate resource allocation and the

monitoring of the quality of care provided by qualified teams. Severity of trauma is specified a major,

moderate and minor. The justification was to further differentiate trauma that consume time and human

resources, such as requiring conscious sedation or regional blocks versus minor injury that necessitates

simple sutures and dressings. Thus, it was concluded to classify as major: needs general anesthesia and/or

hospitalization, moderate: treatment in ER under conscious sedation or regional blocks, minor: treated by

light dressing kit. Anatomical classification was only valuable for major trauma due to its high impact on

resource allocation and the prediction of future needs for rehabilitation. Head/Spine injury includes facial

injury that requires maxilla surgery as well as brain and spinal injury with neurological deficit. It is not

necessary to differentiate anatomical location of injury for moderate and minor injury. The MDS Internet

Survey showed 78% agreed in using both severity and anatomical aspect in categorizing trauma. Division

between causes of trauma such as violence, direct relation to disaster, indirect relation to disaster was also

proposed. It is very important to know this information however the catchment of the etiology could be

relevant for other cases besides trauma situations, thus it was suggested to add these items to the context

section.

Infectious diseases: Two broad types of case definitions are used by clinicians to record infectious diseases

and other health events for surveillance purposes: 1) Syndromic case definitions applicable in resource poor

settings and with little training use very sensitive, but less specific, definitions of diseases (e.g. "fever with

rash”). 2) Clinical case definitions that require stronger history taking and examination skills, and may also

include the use of laboratory tests to confirm the diagnosis and are often less sensitive and more specific in


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classifying diseases and health events under surveillance. Although, use of syndromic case definitions could

be easier for non-health care workers to use, all EMTs should have a qualified medic in the team and should

all be able to use clinical case definitions whilst in the field. The final decision on whether to use syndromic

or clinical case definitions is the responsibility of the Ministry of Health (MOH). However, the vast majority

of countries use clinical case definitions and at a global level these are also recommended by the WHO in its

standardized case definitions for communicable disease control in emergencies. Therefore, although 79% of

respondents in the MDS Internet Survey expressed a preference to use the syndromic case definitions, the

working group concluded that the use of clinical case definitions was most appropriate for the MDS. A total

of 10 communicable diseases were chosen as they are of global public health concern. Additional diseases

should be included in the list based on the epidemiological profile and priorities of the MOH in each country.

Concerns were raised over the inclusion of Fever of Unknown Origin and acute haemorrhagic fever however,

it was agreed to maintain these items in the global form with the option to be removed depending on context.

Surgical/Medical Emergency: Primarily this category was named Non Communicable Disease (NCD) for its

candidate list of NCDs. Interestingly enough, the number of specific diseases was considered less important

compare with the need to monitor conditions that require medical attention. Thus, the integration of non-

trauma surgical and medical emergencies items was suggested. This process led to rename the category NCD

to Surgical/Medical Emergency. Examples of non-trauma surgical emergencies are gastrointestinal

perforation, appendicitis, strangulated ileus, spontaneous pneumothorax, etc. Examples for medical

emergencies are asthmatic attack, gastric bleeding, acute myocardial infarction, stroke, pulmonary

embolism, toxicosis, etc. If the number of cases reported increase, further request for detailed information

from the EMTCC to the reporting team should be considered.

All the context dependent items including diseases depending on the country or disaster type were excluded.

Instead, additional blank columns were added to the bottom of Disease information to allow the Ministry of

Health to add context specific diseases of concern. For example, context dependent for Infectious disease

e.g.) Suspected Malaria / Dengue / TB / Leptospirosis / Rabies. Context dependent for Hazard e.g.) Drowning

/ Hazmat. Context dependent for Population e.g.) Chronic diseases for elderly etc.

Besides Health events, Procedure and outcome when combined with Health Events information support the

analysis from the EMTCC of the severity/impact of the disaster and required resources, while monitoring of

the work load of the EMTs and the quality of the services provided. Regarding the selected procedures, Limb

amputation and obstetric procedures were separated from the major/minor category due to the need for

special care. For example, estimation of future needs of prosthesis and rehabilitation are essential and critical

after limb amputation. In addition to normal vaginal delivery (NVD) and caesarian section, other obstetric

procedures such as instrumental delivery, dilation and curettage (D&C) were discussed as necessary to

monitor as well.

Context: Data items 40-46 in Figure 8 record Context. Although the primary indicator to assess medical

resources needed is the number of patients, it is very important for MOH to evaluate characteristics and

trends of medical needs in relation to the disaster. Protection is an issue that cannot be covered by EMTs

alone however, EMTs have good chance to detect cases and call for a collaborative response with other

stakeholders. Additional blank lines should be included to easily adopt context based items. Relation to

disaster is important for the Ministry of Health that has to evaluate characteristics and trends of medical

needs and their relation to the disaster. Although it may not be easy to judge the relationship clearly, in past

cases such as the earthquake response in Japan, the correlation with the disaster was captured even without

concrete definitions and with much turnover of EMTs.


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Figure 8: Health record data set for emergency documentation, source WHO, 2017


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Item

Name Comment

1 Age <1, 1-4, 5-17, 18-64, 65 Age (estimated age for unknown case)

2 Sex Sex based on biological sex. Male / Female

3 Pregnancy non-pregnant/ Female pregnant

4 Major head / spine injury

Any major trauma to the scalp, skull, brain and spinal cord. (Require care at EMT Type 2 & 3).

5 Major torso injury Any major trauma involving the chest and abdomen that can be penetrating and non-penetrating. (Require care at EMT Type 2 & 3).

6 Major extremity injury

Upper and lower extremity injuries including limb-threatening injuries. (Require care at EMT Type 2 & 3).

7 Moderate injury Injury that can be treated in Emergency Room as outpatient but need conscious sedation or regional blocks.

8 Minor Injury Injury that requires first aid and light dressing care without anesthesia. (EMT Type 1 mobile capable)

9 Acute respiratory infection

Any infection of the upper or lower respiratory tracts.

10 Acute watery diarrhea

Acute diarrhea is defined as passage of three or more loose or watery stools in the past 24 hours with or without dehydration. (WHO Recommended Surveillance Standards WHO/CDS/CSR/ISR/99.2)

11 Acute bloody diarrhea

Acute diarrhea with visible blood in the stool. (WHO Recommended Surveillance Standards WHO/CDS/CSR/ISR/99.2)

12 Acute jaundice syndrome

Acute onset of jaundice and severe illness and absence of any known precipitating factors. (Communicable disease control in emergencies: A field manual. WHO. 2005)

13 Suspected Measles

Any person with fever ANDmaculopapular (nonvesicular) generalized rash AND ONE of the following: cough, runny nose (coryza) or red eyes (conjunctivitis) OR any person in whom a clinician suspects measles. Outbreak surveillance and response in humanitarian emergencies. WHO guidelines for EWARN mplementation. WHO. 2012)

14 Suspected Meningitis

Sudden onset of fever (> 38.0 °Caxillary) and one of the following: neckstiffness, altered consciousness, other meningeal sign or petechial /purpural rash. In children < 1 year, meningitis is suspected when fever isaccompanied by a bulging fontanelle. (Communicable disease control in emergencies: A field manual. WHO.2005)

15 Suspected Tetanus

Either of the following signs 3–21 days following an injury or wound: trismus of the facial muscles or risus sardonicus, painful muscular contractions. Neonatal; Any neonate with normal ability to suck and cry during the first 2 days of life who, between day 3 and day 28, cannot suck normally, or any neonate who becomes stiff or has spasms or both. (Communicable disease control in emergencies: A field manual. WHO. 2005)

16 Acute flaccid paralysis

Acute flaccid paralysis in a child aged < 15 years, including Guillain-Barré syndrome or any paralytic illness in a person of any age in whom poliomyelitis is suspected. (WHO Recommended Surveillance Standards WHO/CDS/CSR/ISR/99.2)

17 Acute haemorrhagic fever

Acute onset of fever (duration of less than 3 weeks) and any two of thefollowing: haemorrhagic or purpuric rash, vomiting with blood, cough with blood, blood in stools, epistaxis, other haemorrhagic symptoms.(WHO Recommended Surveillance Standards WHO/CDS/CSR/ISR/99.2)

18 Fever of unknown origin

Fever (body temperature >38.5 °C) for >48 hours and without other unknown etiology. (Communicable disease control in emergencies: A field manual. WHO. 2005)

19 Surgical /medical emergency: surgical emergency

Non-trauma general surgical emergencies. e.g.) Gastrointestinal perforation, appendicitis, strangulated ileus, pneumothorax

20 Surgical /medical emergency: medical emergency

Conditions that require urgent non-surgical intervention.e.g.) Asthmatic attack, acute myocardial infarction, pulmonary embolism, toxicosis

21 Other: Skin Disease

Disorders of exclusively (or predominantly) the superficial layers of the skin. (Epidemiology and Management of Common Skin Disease in Children in Developing Countries. Department of Child and Adolescent Health and Development. WHO. 2012)

22 Other: Acute mental health and psychosocial problem

Mental illness and psychosocial disorders requiring immediatetreatment and/or social support

23 Other: Obstetric omplications

Pregnancy related complications (e.g. obstructed labor, severe bleedingetc..)

24 Other: Severe Acute Malnutrition (SAM) *

A very low weight for height (below -3 z scores of the median WHO growth standards), by visible severe wasting, or by the presence of nutritional oedema. In children aged 6–59 months, an arm circumference less than 110 mm is also indicative of severe acute malnutrition. ( COMMUNITY-BASED MANAGEMENT OF SEVERE ACUTE MALNUTRITION; A Joint Statement by the World Health Organization, the World Food Programme, the United Nations System Standing Committee on Nutrition and the United Nations Children’s Fund. 2007)


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25 Other: Other diagnosis, not specified above

Other diagnosis, not specified on this list.

Procedure and Outcome

26 Procedure: Major procedure except limb amputation and obstetric

Procedures that usually require general anesthesia and hospitalization. e.g.) open reduction internal fixation, trauma laparotomy

27 Procedure: Minor Procedure

Procedure acceptably performed with local anesthesia, no hospitalization.

28 Limb amputation excluding digits *

Upper and lower limb amputations, excluding toe amputations. (EMTCC COORDINATION HANDBOOK. WHO. 2015)

29 Normal Vaginal Delivery (NVD)

Vaginal delivery

30 Caesarean section Delivery by Caesarean section

31 Other obstetrics and gynecology

Other obstetrics procedure (e.g. D&C, ectopic pregnancy etc..)

32 Outcome: Discharge without follow up

Patients who don't require follow up after hospitalization

33 Outcome: Discharge with follow up

Patients who require medical follow up after hospitalization

34 Outcome: Admission

Patients who have been admitted to the facility (in-patient department) excluding observations.

35 Outcome: Referral / Transfer

Patient who referred/transferred to other medical facilities.

36 Outcome: Left against medical advice

Patient who left EMT facility against medical advice

37 Outcome: Dead on arrival

Patient who is found/brought clinically dead upon the arrival to the EMT facility

38 Outcome: Death within facility*

Death of an admitted patient occurred within the EMT facility

39 Outcome: Requiring long term rehabilitation *

Patients requiring long term rehabilitation services secondary to the severity of the lesion and/or the presence of permanent disability

Context

40 Relation to Disaster: Directly related to disaster

Patient visit with injury directly causedby disastere.g.) Injury caused by typhoon /earthquake / tsunami / eruption,drowning, burn

41 Relation to Disaster: Indirectly related to disaster

Patient visit with disease including injury caused by post disaster environment and/or Patient who deteriorate chronicle conditions due to lack of access to healthcare secondary to the disaster. e.g.) Disease / injury related to environment / situation caused by the disaster, ARI, diarrhea, skin disease, injury by debris

42 Relation to Disaster: Not related to disaster

Patient visit with health problem not caused by disaster and without urgency. e.g.) Non communicable diseases (NCD), cancer

43 Protection: Vulnerable child

Vulnerable child who are in urgent needs for protection. e.g.) child separated from both parents and other relatives and arenot being cared for by an adult (The UN Committee on the Rights of the p. 35 Child, Convention on the Rights of the Child 2005)

44 Protection: Vulnerable adult

Vulnerable adult who are in urgent needs for protection. e.g.) Elderly / handicapped requiring caretaker. Who is or may be in need of community care services by reason of mental or other disability, age or illness; and who is or may be unable to take care of him or herself, or unable to protect him or herself against significant harm or exploitation.(1997 Consultation Paper Who decides? issued by the Lord Chancellor’s Department UK)

45 Protection:Sexual and ender Based Violence SGBV)

Any act that is perpetrated against a person’s will and is based on gender norms and unequal power relationships. Typology: physical; sexual; psychological; and deprivation or neglect. (WHO Violence Prevention Alliance)

46 Protection:Violence (non-SGBV)

The intentional use of physical force or power, threatened or actual, against oneself, another person, or against a group or community, that either results in or has a high likelihood of resulting in injury, death, psychological harm, maldevelopment, or deprivation. (WHO Violence Prevention Alliance)


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Figure 9: MDS tick on a box source WHO.


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Figure 10: MDS tally Sheet.


67

Figure 11: Daily reporting form to EMT coordination center.


68

Figure 12: Feedback to coordination center, WHO 2017


69

Gerlant van Berlaer in his thesis” Disaster and Humanitarian Emergency Response: the importance of field

medical data registration”, Vrije Universiteit Brussels 201721, has further elaborated on this work offering

useful data sets for emergency reporting.

Disaster patients suffer from specific injuries, infections (“communicable diseases”), destabilization of

chronic diseases (“non-communicable”), mental health disorders, and other problems such as premature

birth. He observed that the case mix depends on seven factors: type of disaster, time of on-site arrival

(surgical cases decrease after the first two weeks to the prejudice of infectious, chronic and pre-existing

diseases), the profile and context of the affected country, and the type of field hospital erected. Injuries,

wounds and fractures are common in the first two weeks after earthquakes and storms. Infections mostly

respiratory, digestive, eye, or skin merge quickly after bad living conditions in temporary shelters due to lack

of water, food, and sanitation. Children are affected more than adults in 65 to 95%. Patients with chronic

diseases like heart disease, high blood pressure, and asthma, destabilize as they miss their routine treatment.

People with psychological problems, pregnant women or women in labor, and newborns require special

attention.

Figure 13: Medical needs following the sudden onset of a disaster22

Medical management of people following a disaster involves first aid assessment and triage of victims to

prioritize treatment, decontamination of people exposed to chemicals or radioactive materials, diagnosis,

special and general supportive medical care, monitoring and prophylaxis aainst infection, psychological

support and long-term follow-up.

Dr van Berlaer notes that offering the ability to easily document interventions, would enhance our knowledge

and improve future interventions. Disaster patient records are hard to locate and generally there is no

21 https://gf.vub.ac.be/images/doct/Gerlant_van_Berlaer.pdf 22 von Schreeb J, Riddez L, Samnegård H, Rosling H. Foreign field hospitals in the recent sudden-onset disasters in Iran, Haiti, Indonesia, and Pakistan. Prehosp Disaster Med. 2008 Mar-Apr;23(2):144-51; discussion 152-3. https://extranet.who.int/emt/sites/default/files/documents/Foreign%20Field%20Hospitals%20in%20SOD.pdf

https://extranet.who.int/emt/sites/default/files/documents/Foreign%20Field%20Hospitals%20in%20SOD.pdf


70

consensus on how these records can be kept and obtained. Examples are mostly available on paper, Dr

Berlaer notes, and next to demographic details such as age, gender, and immunization state, free text fields

and a body diagram assist in documenting injuries. Limited are the examples that offer ceck boxes with a list

of possible injuries and diseases. In his thesis, he compiled a list containing the most frequent items in the

description of complaints, diagnoses, and treatments of disaster patients during humanitarian relief

operations in the aftermath of five different types of disasters and identified patterns in the pathology

sustained by victims.

Dr van Berlaer draw his results from five humanitarian initiatives: the Haiti earthquake in 2010, the Congo-

Brazzaville explosion in 2012, the Philipines typhoon in 2013, the Syrian civil war in 2015, and Asylum seekers

in a refugee camp in Brussels in September 2015. Relating the work of WHO EMT with the literature, Dr. van

Belaer proposed a list of complaints, symptoms and signs and a list of diagnosis mapped to ICD10 to be

included in a uniform template (see Figure 14, Figure 15).


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Figure 14: Proposed list of complaints symptoms and signs by Dr. Van Berlaer in his thesis (2017) page 119.


72

Figure 15: Identification of diagosis in the proposed template by Dr. Van Berlaer in his thesis (2017) page 120

Citizens, Apps, and Data: The role of the Patient Summary


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8.5 Conference Sessions: Citizens, Apps, and Data: The role of the Patient Summary

Citizens, Apps, and Data: The role of the Patient Summary

Lisbon, Tuesday April 4, 2017

11:00-12:00 Panel Session 1: Apps in Prevention, Nutrition, and Medication management

Objective: Shaping our expectations on the interplay of Apps, Tools, and Data

• Apps for Cardiovascular Risk, Hypertension, and Medication Management23, Prof. Gianfranco

Parati, University degli Studi Milano Bicocca, Instituto Auxologico Italiano Milano

• Nutrition Apps mobilizing and Supporting the Citizen’s Work as personal health managers24, Prof

Anne Moen, University of Norway

• Assessing Connected Health Technology, Professor Emeritus Francesco Pinciroli25, Politechnico di

Milano

• Discussion

12:00-13:00 Panel Session 2: From Integrated Care to Connected Health

Objective: Approaching our Health trajectory as an opportunity for innovation

• Early home supported discharge: the promising role of eHealth26, Professor Silvina Santana,

University of Aveiro, Portugal

• Advances in telerehabilitation27, Josep M. Tormos Muñoz, Institut Guttmann, Neurorehabilitation

hospital, Barcelona, Spain • First experience with Person Centred Care through the silo's: Blue Line design principles

explained28, Jacob Hofdijk, CaseMix, Netherlands

• Discussion

13:00-14:00 Lunch Break

14:00-15:00 Panel Session 3: Charting the future

Objective: Bridging patient summary perspectives for a better future

• Guidelines for the Personal health record in relation to Patient Summary Standards29, Anna Orlova

23 https://drive.google.com/open?id=0B8R_QjUxhVaZWXhtNDAtU09YMTA 24 https://drive.google.com/open?id=0B8R_QjUxhVaZZVJkZm1peVBERnc 25 https://drive.google.com/open?id=0B8R_QjUxhVaZRW80bXFrSlNZRnM 26 https://drive.google.com/open?id=0B8R_QjUxhVaZdXVuMTNBS2kzMjA 27 https://drive.google.com/open?id=0B8R_QjUxhVaZbjVWTVJCV0tybXM 28 https://drive.google.com/open?id=0B8R_QjUxhVaZM3h2S0RKNG8zcGc 29 https://drive.google.com/open?id=0B8R_QjUxhVaZQTgxTVFLQ3FuSk0

https://drive.google.com/open?id=0B8R_QjUxhVaZWXhtNDAtU09YMTA

https://drive.google.com/open?id=0B8R_QjUxhVaZZVJkZm1peVBERnc

https://drive.google.com/open?id=0B8R_QjUxhVaZRW80bXFrSlNZRnM

https://drive.google.com/open?id=0B8R_QjUxhVaZdXVuMTNBS2kzMjA

https://drive.google.com/open?id=0B8R_QjUxhVaZbjVWTVJCV0tybXM

https://drive.google.com/open?id=0B8R_QjUxhVaZM3h2S0RKNG8zcGc

https://drive.google.com/open?id=0B8R_QjUxhVaZM3h2S0RKNG8zcGc

https://drive.google.com/open?id=0B8R_QjUxhVaZQTgxTVFLQ3FuSk0


74

• ValueHealth - Establishing the value and business models for sustainable eHealth services in

Europe30, Zoi Kolitsi

• From eStandards to Trillium Bridge-II: the role of collaborative standards development in scaling up

adoption of interoperable patient summaries31, C. Chronaki, HL7 Foundation

• Discussion

16:00 - 17:00 Panel Session 4: Citizen at the center for cooperation in the health team: How do we move

forward with Patient Summaries?

Professor GianFranco Parati presented on the ”Impact of a Validated Application for Smartphones and a

Patients Management Systemon Blood Pressure Control in Hypertension.” He introduced high blood pressure

as a critical risk factor highlighted by WHO as the silent killer, causing 17 million deaths/year from

cardiovascular disease (1/3 of the total, 57% as of 201532), 9.4 million deaths/year from complications (45%

of deaths due to heart disease and 51% of deaths due to stroke). Meanwhile, the prevalence of hypertension

is 40% of adults aged 25-55 worldwide (2008), with raising incidence, and unsatisfactory control (40%). The

economic burden cannot be neglected either. In Europe (2008), hypertension costs 192 billions € per year,

57% (approx 110 billions) management costs, 21% loss of work, and 22% informal care (approx 82 billions).

Professor Parati rests his hope in emerging mHealth technology and presented a European Society of

Hypertension (ESH) endorsed app that has been validated in different segments of the population and is

supported by a European wide network of specialists. Prof. Parati noted some of the unmet needs in

hypertension management, which could be supported by mobile health technology: (a) poor medication

adherence; (b) inertia of specialists (c) limited attention to 24h out-of-office monitoring of blood pressure;

(d) limited attention to more frequent and proper use of combination treatment for smooth control of blood

pressure; health systems factors that pose difficulty in implementing dynamic and continuous assessment of

blood pressure and modifiable cardiovascular risk factors. In the discussion, there was agreement that shared

use of appropriately configured patient summary data set, could help improve health education and

medication compliance, enhance the patient-doctor relationship and reduce costs by limiting the number of

unnecessary inperson visits to the clinic. This workshop and followup ones in June and November in Milan

provided input to the patient summary use case for the ESH app.

Anne Moen (University of Oslo) presented the APPETITT app which has been adapted to elderly people in

Norway to help them follow a balanced diet. The content in the nutrition app includes choices of food and

drink focusing on variation, enrichment, and seasonality. Particular attention is on meal plan and recording,

visualizing and dialog, planning the shopping list, as well as “company” and social contact. The final solution

is easy an intuitive to use for elders and health providers following the principles of Uiversal Design. We

discussed the role of the patient summary in such an app as part of the personal profile of the individual. At

this first stage APPETITT focused on wellness, but future extensions would consider also specific health needs.

Then, Professor Francesco Pinciroli from Politechnico di Milan, presenting the topic of assessing m-health

apps and the larger challenges of in digital health: EHR for all, data reuse, process modeling, user profiling,

risk analysis, minimal data sets, proactive guidelines, and sustainable privacy. He concluded that we need

leverage the KNOWLEDGE triangle i.e. generating data, creating new and systematizing old, intelligence on

30 https://drive.google.com/open?id=0B8R_QjUxhVaZYmZrME96WWFPc2s 31 https://drive.google.com/open?id=0B8R_QjUxhVaZNm5SRFNlbERzMzA 32 The Percentage of CVD deaths in europe attributable to high blood pressure risk factors, by sex, 2015, is 57% (http://www.ehnheart.org/images/CVD-statistics-report-August-2017.pdf, page 97)

https://drive.google.com/open?id=0B8R_QjUxhVaZYmZrME96WWFPc2s

https://drive.google.com/open?id=0B8R_QjUxhVaZYmZrME96WWFPc2s

https://drive.google.com/open?id=0B8R_QjUxhVaZNm5SRFNlbERzMzA

https://drive.google.com/open?id=0B8R_QjUxhVaZNm5SRFNlbERzMzA

http://www.ehnheart.org/images/CVD-statistics-report-August-2017.pdf


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policies of all kinds, in other words ”what we can do” with the REQUEST triangle of ”what we need”:

behaviours & health, professional time to care, and the wider environment.

Then, Professor Silvina Santana, Dr. Josep M. Tormos Muñoz, and Dr. Hofdijk focussed on rehabilitation,

describing a large scale integrated trial, the current protocols of care employed in a best practice

rehabilitation hospital in Catalunya, Spain and the concept of the Blue Cycle. In discussing the role of patient

summaries in integrated care, an important element that emerged is the versatility of operation activities

“jobs” that patient summaries can play as we move towards the data economy.

Silvina Santana shared suggestions on the role of patient summaries building on the experience of the

homecare trial in the Aveiro region in Portugal. The homecare trial evaluated the role of the community in

rehabilitation after stroke. She indicated major actions to be taken which indicate operational activities for

use of the patient summary:

• Capture structural and implementation conditions with identification, categorization and

registration of certified providers on an ongoing base termination of contracts based on reliable

indicators of performance, including users’ input.

• Certify, deliver and assure quality of care procedures and patient safety with

definition/redefinition of guidelines based on available knowledge and daily experience, web-based

rehabilitation and training on activities of daily living, information and education for patients and

informal caregivers, as well as training of care professionals and case managers.

• Strengthen communication and coordination mechanisms to improve patient safety (e.g., double

medication, harmful rehab procedures) and meaningful patient and family participation. It is

urgently needed to build mechanisms and processes to support and assure communication and

support adherence on scheduling of integrated, multidisciplinary interventions and timing for

patient’s assessment: patient-doctor; hospital-rehabilitation unit; doctor-patient family; homecare

team-patient or patient family as well as assure coordination: regular contacts between the team

and the patient (or patient family); contacts between the members of the team of therapists and

the case manager. In particular, patient summaries are essential in the complex, multi-point, multi-

provider settings with many care transitions underpinning integrated care. This goes far beyond

emergency situations, setting patient summaries as valuable context in scheduling of integrated,

multidisciplinary interventions. Use of patient summaries can have important implications on

patient and care professional safety, due to the so many care transitions these patients

experience.

Dr. Josep M. Tormos Muñoz, research director, in Institute Guttmann, a neurorehabilitation hospital in

Catalunya, shared his view of how open innovation can help harmonously integrate digital health

technologies into health care services, bringing information we trust into personal

health records. He started sharing the well known fact that the current model of care

is no longer sustainable as Dementia and AD, Stroke and Car Accidents are within top

ten etiologies related to global burden of disease: cognitive decline induce disability

and physical disability. ICT can provide innovative and more efficient approaches, but

despite the large number of pilots, so far it has limited impact on health care delivery. The key assumption

of the care and cure system of today is that most severe conditions affect lower % of population and the

intensity of care decays in time (Acute vs Chronic care). In other words, intensity of care tends to be inverse

of the quantitative demand, and any changes to this trend are considered as epidemic. This is where we are

and why innovation is needed. Aging creates a growing demand that is extended and increased along time.


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The problem expands beyond medical care and exceeds the capacity of social support networks, in number

and complexity.

Big tech companies have eHealth divisions, there is a proliferation of apps, but the adoption of innovation is

poor, as reflected in the number of patients supported and the number of health professionals supporting it.

One problem is the business model. There are according to Dr. Muñoz two main business models, the Med-

Tech business model where care-providers buy the technology and professionals use it for patients to benefit

and the pharmaceutical business model, where care-provider recognize the solution, professional prescribe

(use) it, and patient/users pay for and benefit from it. He moved on to highlight the need for service

innovation and the opportunity of big data on service efficiency, along with technology and methodology

barriers. Adoption the open service innovation paradigm, people do not perceive the value of a technology

in it self, but on the service that they take or receive from. As an example, he offered the ICT based Cognitive

Training Platform of Gunnmann Institute, which since 2005 has offered more than 5000 programs to

Intensive, Personalized, Supervised, and Fun with 160000 sessions and 1 million exercises. The key is to

innovate, differentiate from competitors in efficiency and knowledge and co-create services, content, and

new technologies.

Then, Jacob Hopfdijk discussed a bridge from Integrated Care to Connected Health offering the experience

of Person Centred Care through the silo's explaining the Blue Line design principles with the Patient Summary

as a window to a person’s health data. Health and social care is fragmented and person centered care is a

challenge. The five blue line principles are technical interoperability, semantic intereoperability, social

interoperability, underpinning an Individual Plan Balancing health / life goals and Society Incentive

Framework. The focus should be on the patient’s problems, the information collected by the provider, who

decides what is the problem, what to do and then follows through the decision. Jacob reminded of the

Subjective Objective Assessment Plan (SOAP) model of Larry Weed, which is still relevant with the weight

shift to the Plan section. From the Dutch experience, Jacob highlighted the value of an IHE XDS infrastructure

to register and search documents.

In the last part Anna Orlova, Director of Standards at AHIMA spoke on " Guidelines for the Personal Health

Record in Relation to Patient Summary Standards”. She offered definitions from ONC (2005) on EMR, An

electronic record of health-related information on an individual that is created, gathered, managed, and

consulted by authorized clinicians and staff within one health care organization, EHR An electronic record of

health-related information on an individual that conforms to nationally recognized interoperability standards

and that is created, managed, and consulted by authorized clinicians and staff across more than one health

care organization, and PHR An electronic record of health-related information on an individual that conforms

to nationally recognized interoperability standards and that is drawn from multiple sources while being

managed, shared, and controlled by the individual. Then, she related these terms the notion of the patient

summary assembled from individual visits. EHR can be a legal record, it is episodic first, could be longitudinal

including administrative, financial, clinical data and the primary user is the Provider. In contrast, the PHR is

not a legal record, could be cradle to grave, may store non-clinical data and the primary user is the individual.

The PHR is about solving specific problems: (a) support consumer empowerment i.e. make informed health

decisions, facilitate patient-clinician interaction and communication, exchange health information, and

provide convenience (e.g., scheduling) (b) Improved care outcomes i.e. better quality care, reduced costs,

and better healthcare experience. Thus, PHRs are primarily to make healthcare decisions, facilitate health

information exchange between patients and their physicians, and/or serve as a record consumers keep for

themselves.


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Zoi Kolitsi on the Business models of eHealth interoperability following the VeH project, and myself, I shared

on the ideas of the eStandards roadmap, the lifecycle model and the CoCreation, Governance, Alignment

methodology as they apply to patient summaries. The discussion was quite rich, covering subjects from safety

(i.e. analogy of safety belts in cars), to standardizing models for analytics. Several of the scenarios discussed

in the next section, benefited from this very highly attended (~200 people in the first session) workshop.

8.6 Workshop: Healthcare Information Standards for Frailty: Why, When and How, Panel

at Informatics for Health, Manchester April 24-27, 2017 Frailty is an age-related state of vulnerability to the risk of adverse health outcomes after a stressor event.

The condition predisposes individuals to progressive decline in different functional domains, leading to falls

and fractures, disability and dependency on others, hospitalization, institutional placement and ultimately

death. Through discussion and active participation, the audience to this panel will gain insights in the

problems of managing frail elderly patients in the absence of condition-related decision support and reach

concrete proposals in the form of a call for action, on the main question: What data would be necessary to

drive the strategic and operational agenda and facilitate coordination across technological, professional

and organizational strands to ensure active healthy ageing?

8.6.1 Rationale The goal is to discuss challenges for interoperability, technology and standards related to management of

frailty. The trajectory of a frail elder citizen can take him from a walk to the park to the ER department in an

eye blink. What kind of data should the patient summary provide to optimize care in emergency, planned

and every day settings? The user story will be the starting point and reflection opportunity to then zoom in

on critical aspects in the user trajectory where information related to frailty condition would be necessary.

We will discuss results from a recent Delphi panel in Europe regarding indicators for frailty interventions

and the potential of interoperability standards and emerging solutions to enable innovative services. We

will address the following questions:

• where are we and where do we wish to be? • what do current tools and approaches to standards do to support the flow of information of a frail

person on a health-illness trajectory? • what are the challenges that must be addressed to improve coordinated, holistic services when

caring for frail elderly citizens? • what initiatives are necessary to create an information infrastructure for frail people to navigate their

complex life? • can an augmented or extended patient summary serve to coordinate and orient the care and daily

life of frail people?

8.6.2 Outcome The audience to this workshop will gain insights in the problems of managing frailty among elderly patients

in the absence of condition-related decision support and reach concrete proposals in the form of a call for

action, on the main question: What data would be necessary to drive the strategic and operational agenda

and facilitate coordination across technological, professional and organizational strands to ensure potential

reversal of prefrail patients and active healthy aging?

8.6.3 Panellists

• Silvina Santana; University of Aveiro: Frail elder citizen trajectories: user story as starting point and

reflection opportunity33

33 https://drive.google.com/open?id=0B8R_QjUxhVaZWkpJQ2J6Y2NoTms

https://drive.google.com/open?id=0B8R_QjUxhVaZWkpJQ2J6Y2NoTms

https://drive.google.com/open?id=0B8R_QjUxhVaZWkpJQ2J6Y2NoTms


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• Maria Bujnowska; University of Wroclaw: Aspects of coordinated, holistic service approach to

frailty management3435

• Sarah Damanti; Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico Milano: Challenges in

frailty-related information use and decision making in clinical practice 36

• Silvina Santana; University of Aveiro: Indicators for frailty interventions: results from a recent

European Delphi panel37

• Catherine Chronaki; HL7 Foundation Brussels: The role of patient summary standards and

specifications on integrated and cross-border management of frailty38

8.6.4 Submitted Panel at MIE2017

34 https://drive.google.com/open?id=0B8R_QjUxhVaZTGF3Z0FmWHRzb3M 35 https://drive.google.com/open?id=0B8R_QjUxhVaZTGF3Z0FmWHRzb3M 36 https://drive.google.com/open?id=0B8R_QjUxhVaZWkJmVEpESUJOX00 37 https://drive.google.com/open?id=0B8R_QjUxhVaZVjRkdF9kV21KcDA 38 https://drive.google.com/open?id=0B8R_QjUxhVaZUF9yM0FNdk9Ma00

https://drive.google.com/open?id=0B8R_QjUxhVaZTGF3Z0FmWHRzb3M

https://drive.google.com/open?id=0B8R_QjUxhVaZTGF3Z0FmWHRzb3M

https://drive.google.com/open?id=0B8R_QjUxhVaZWkJmVEpESUJOX00

https://drive.google.com/open?id=0B8R_QjUxhVaZWkJmVEpESUJOX00

https://drive.google.com/open?id=0B8R_QjUxhVaZVjRkdF9kV21KcDA



https://drive.google.com/open?id=0B8R_QjUxhVaZUF9yM0FNdk9Ma00

https://drive.google.com/open?id=0B8R_QjUxhVaZUF9yM0FNdk9Ma00


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Figure 16: Account of events in the life of an elderly frail person (curtecy of focus project).

Figure 17: Life trajector of John Doe (courtecy of FOCUS project).


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8.7 Workshop: Medication Reconciliation – time to rethink informatics support? Informatics for Health, Manchester, April 24-27, 2017

Petter Hurlen contrasted the cases of a young and elderly person. The young person dealt with one doctor,

one medication, and one cure, usually as an episode. The elderly patient dealt with eight (groups of) doctors,

fifteen drugs. These drugs correspond to 41 brands and 230,400 combinations. Moreover, the elderly needs

support from his family or informal caregivers for effective medication. He wondered whether current

solutions were developed with the young person/ single doctor in mind. Do they consider that the elderly

patients interacting with multiple health professionals had very different needs?

Line Linstad referred to the “closed medication loop” in specialist- and primary care that is referred to in

Norwegian e-health policy. The national e-health plan 2017-2022 aims at creating three scenarios, which will

include one medication list through the patient pathway from home, primary care (GP, home care, nursing

homes) to specialist care involving all the actors in the Norwegian e-health eco-system.

Christian Nøhr presented the shared medication record project (SMR) in Denmark and reflected on its low

uptake, with reported medication record updates in 11-15% of all GP consultations. The shared medication

record introduced in 2010 offers a medication specific view on a patients’ health record. SMR targets

medication errors, medicine reconciliation, and the Patients’ ability to overview their medication. The

general practitioners are invited to carry out SMR consultations and make a new prescription, put a

prescription on hold or off hold, and update, continue or discontinue a prescription. Christian Nøhr suggested

that the SMR project should pay more attention on implementation science to promote the systematic

uptake of clinical research and evidence-based findings into routine practice and hence improve the quality

and effectiveness of health care.


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Figure 18: Role of the family in reconciling medication between episodes of care: Step V: Patient Involvement Post-Discharge & Prior to Next Episode of Care [High 5s Project: Action on Patient Safety - SOP Flow Charts]

Catherine Chronaki presented on and the potential role of patient summaries in medication reconciliation.

According to the baseline patient summary use case now realized under the Connected Europe Facility

eHealth Digital Services infrastructure, the treating physician can request your patient summary from your

country of origin, in the context of emergency or unplanned care. The patient summary can contribute to

safe care, offering information about the most recent active medications, problems, allergies, vaccinations,

etc. and support patients’ rights to cross border healthcare. So, how can we make sure the medications

included in the patient summary are reconciled? Catherine noted that medication reconciliation is a complex

process and Standard Operating Procedures (SOP) proposed by the 5S WHO Study39 are no doubt time-

consuming. Beyond engaging health professionals, the SOP foresee a role for patients and their family

particularly in-home care following discharge from the hospital. The document also provides an operational

context of the patient summary as the container for an actively reconciled medication list in close

cooperation of the health team with the family.

Anne Moen, commenting on the previous talks, noted that patients, family and informal caregivers are the

most under-appreciated resource in the medication workflow. Patients are involved every step in the chain,

taking (and benefiting from) the medication, either prescribed or purchased “over the counter”. In many

cases patients, their families, and caregivers would benefit from better access and oversight over their

medication information. In fact, as Anne stressed, there is untapped potential in engaging the person close

to the medication administration to uphold safety, avoid errors, and report adverse events. Digital health

literacy, activation, and empowerment are the key to unlock this potential.

You can see the presentations in the workshop here40.

39 http://www.who.int/patientsafety/implementation/solutions/high5s/h5_flow-chart.pdf?ua=1 40 https://drive.google.com/open?id=1uaHSDiCYUXs7l9kAqKMaGnYH83im6kAe

https://drive.google.com/open?id=1uaHSDiCYUXs7l9kAqKMaGnYH83im6kAe

https://drive.google.com/open?id=1uaHSDiCYUXs7l9kAqKMaGnYH83im6kAe


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8.8 Workshop on Mobile Health at the European Society of Hypertension meeting.

Prof. Anne Moen of the University of Oslo and immediate past Chair of the European Federation of Health

informatics (EFMI) presented several innovative mHealth solutions developed by members of the EFMI

community. Among these apps was APPETIT, which aims to help aging Norwegians eat healthy food. Prof.

Enrico Caiani, biomedical engineer and chair of the e-Cardiology Working Group of the European Society of

Cardiology, spoke on the importance on testing validity and reliability of apps and wearables for exercise

monitoring. Prof. Parati presented the results of the ESH Care app, currently translated in more 12 languages,

which usage resulted in an improved blood pressure control. Catherine Chronaki brought it all together with

a presentation on how the international patient summary standard can help connect the dots. Terje Pettso,

head of sector for eHealth and ageing policy, at the Unit of eHealth, Wellbeing and Ageing of DG CONNECT

at the European Commission, presented on the multitude of mHealth initiatives catalyzed by EU Funding.

Ain Aaiviksso, chair of the mHealth subgroup of the eHN and deputy secretary general for e-Services and

Innovation at the Ministry of Social affairs of the Republic of Estonia, welcomed the initiative and stressed

the commitment of the Estonia and the eHealth network to standards and interoperability.

Javier Ferrero Alvarez, Chief Information Office of the Andalusian Agency for Healthcare Quality, shared their

best practices in assessing and validating mobile apps connected to their healthcare infrastructure as a way

to advance digital health innovation.

Henrique Martins, president of the Board of SPMS which is the eHealth agency of Portugal and Chair of the

eHealth Member States under the eHDSI program, shared tangible examples of innovative mHealth solutions

incorporating elements of patient summaries in Portugal.


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8.8.1 Agreement between ESH and Trillium-II


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8.9 Questionnaire for prioritization of scenarios for extending use of patient summaries


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Figure 19: Question: 1. Emergency and Disaster Management – Evacuation camp and Field Hospital. Number of responses: 12 responses.

Figure 20: Question: 2. Patient summaries Continuity of care for chronic patients. Number of responses: 12 responses.


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Figure 21: Question 3. Olympic Games – health care for Athletes, Olympic Family and Spectators. Number of responses: 12 responses.

Figure 22: Question 4. Integrated Care: Frailty scores for Elderly. Number of responses: 12 responses.

Although only 12 responses appear here, LISPA distributed a questionnaire internally and the results of an internal consensus process were entered

online.


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Figure 23: Question 5. Patient and Family Empowerment: Medication List Reconciliation. Number of responses: 12 responses.

Figure 24: Question 6. Prevention: ESH Hypertension App – extending with Patient Summary data. Number of responses: 12 responses.


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Figure 25: Question 7. WHO International Certificate Of Vaccination Or Prophylaxis (ICVP) (aka Yellow card) – Vaccination Record. Number of responses: 12 responses.

Figure 26: Question 8. Medical Ids – Extending In Case of Emergency (ICE). Number of responses: 12 responses.


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Figure 27: Question 9. Last-Mile Use Case: When patients meet unfamiliar providers at point of care. Number of responses: 12 responses.

Documents

TRILLIUM II · 2018. 6. 1. · Deliverable 3.1: Use case selection and analysis of patient summary use cases beyond emergency or unplanned care 1 TRILLIUM II Reinforcing the Bridges