Medinddragelse af patienter

i forskningsprocessen

Hanne Konradsen

Lektor, Karolinska Institutet Stockholm

Hvorfor

• Værdi eller politisk korrekt (formentlig krav i fremtidige

fondsansøgninger)

• Hurtigere, effektivere, brugbare resultater, større grad af

implementering

• Effekten er usikker (skyldes rapporteringer)• Staniszewska and Denegri (2013) Patient and public involvement in research:future challenges Evid Based Nurs

16;69

Undergrundskortet - Involve

• Erfaringer fra Gentofte Hospital (Forskingens dag og

Brugerråd)

• Public Engagement in Prioritizing Research Proposals - A Case Study (Australien)

(Fremlægger forslag - Stemmer om hvem der skal have pengene)

• The Prostate Cancer Charity (England)

(bestemmer hvilke områder der skal prioriteres)

Applications for funding in this call should address two broad themes relating to the needs of men living with and beyond prostate cancer:

understanding the long term impact of treatment side effects of all treatments; and where relevant, to aid informed decision-making about treatment;

and

interventions to support men who have made their treatment choices and/or are experiencing treatment side effects

Within these themes, applications should focus on one (or both) of two priority areas:

Psychosexual needs of men (and their partners) with prostate cancer

Long term psychological support needs

Patient roller

• Konsulenter

• Samarbejdspartnere

• Deltagerstyret

Forskningstyper

• Alle typer kan anvendes

Erfaringer fra England

• Clarify the expectations and responsibilities of all stakeholders – for example what you will expect from the people who are involved and what they can expect from you. This includes researchers and clinicians who will be working with service users, who may need advice and guidance to support them in a new way of working.

• Ensure consistency in practice across your department and/or your organisation – some policies will need to be organisation-wide

• Help you to manage difficult situations – for example if you have a clear policy stating your expectations of service users who are working with you, this will give you clear grounds for removing someone who is not fulfilling their role.

• Patientforeninger der rekruterer og underviser kommende deltagere

• https://reumatikerforbundet.org/om-oss/brukarmedverkan-i-forskning/

• Det ställs en rad krav på den som vill bli forskningspartner:

• Erfarenhet av att leva med kronisk sjukdom, egen eller hos närstående

• Intresse för forskning

• Engagemang, tid och ork.

• Kommunikativ förmåga, både i tal och skrift.

• Behärska engelska språket.

• Föreningsaktiv.

• Cochrane

• Getting involved does not require formal qualifications.

• http://www.patientsacademy.eu/index.php/en/about-eupati

• Europæisk akademi der vi uddanne patienter tilat involvere sig i forskning og udvikling af ny medicin

• We aim to help patients be more educated and involved in the research and development process of new medicines by offering reliable, objective, comprehensive lay-friendly information and training on the research and development process of medicines. We will increase the capacity of patients to be effective advocates with meaningful involvement in areas like drug discovery and non-clinical testing, planning and conduct of clinical trials, regulatory affairs, assessment of safety of medicines, benefit-risk assessment, as well as principles of health technology assessment.

• Mest evaluering har foregået i forhold til detagende

patienter og forskere (empowerment, gensidig respekt,

men svært at samarbejde)Brett et al (2014) A systematic review of the impact of patient and public involvement on service user, researchers and

communities Patient 7;387

• Den forskning der er gennemført, har brugt idealet om

inddragelse men ikke beskrevet hvordan det har gavnet

”at det er worthwhile and valuable” • Tierney et al (2014) A critical analysis of the implementation of service user involvement in primary care research and health

service development using normalization process theory Health Expectations

• Formålet med at inddrage brugere i sundhedsforskning kan vurderes

på fleremåder; forskningens relevans, forskningshöjde (taler her om

at sikre inklusion af nok patienter), forskningens effekt og

samfundsmässige konsekvens

• (Sundhedsforskning – et samarbejde mellem forskere og brugere

Nationalt samarbejdsforum for sundhedstjenesteforskning)

• Være med til at bestemme de vigtigste endpoints

https://webcore.mskcc.org/breastq/index.htm

Fremtidige udfordringer?

• Hvem; Patienter, Nogen der taler på patientens vegne

(børn, demente, terminale, psykisk syge), Familier

• Kan det klares og stadig bevare impact

• Koster det for meget