Communication Matters – Research Matters: an AAC Evidence Base April 2013

Communication Matters – Research Matters: an AAC Evidence Base

April 2013

CAP Project

CAP Project

Bercow reportBercow report

SCOPE’sSCOPE’sNo Voice,No Voice,No Choice No Choice campaigncampaign

Government’s “Better Communication Action Plan” publishedGovernment’s “Better Communication Action Plan” published

Scottish Govt. Scottish Govt. engages engages

“…no funds available…

“…post code lottery…

“…what is the

need?”

“…we can only fund 2

devices…”

“…post code lottery…

“…no money…”

Communication Matters – our aims• Increase awareness of AAC• Enable the exchange of information &

ideas• Support research into AAC• Empower people with complex

communication needs

The AAC Evidence Base project

£468k grant from Big Lottery FundUK-wide researchHigh-tech & low-tech AACStarted June 2010 (ends June 2013)

Project outcomes• Increase awareness of the need for AAC• Increase understanding of current AAC

provision• Improved access to evidence about AAC• Building research capacity

Project team

Professor Pam Enderby

Dr JaniceMurray

Simon Judge

Katie HolmesDavid Morgan

Communication Matters – Research Matters: an AAC Evidence Base

May 2013David Morgan

@Comm_Matters

#righttoavoice#AAC

#research

Project outcomes Increase awareness of the need

for AAC Increase understanding of

current AAC provision Improved access to evidence

about AAC Building research capacity

The research team

Professor Pam EnderbyDr Sarah CreerDr Alex JohnSimon Judge

Dr Susan Baxter

The data mountain

Interviews

Online surveys

People who use AAC

Health database searches

Online surveys Focus groups

Scoping survey

Literature searches

Practitioners survey

Voluntary sector Communication partners

AAC industry

Professionals

Commissioners & policy makers

Systematic literature review

involving

Project outcomes Increase awareness of the need Increase awareness of the need

for AACfor AAC Increase understanding of

current AAC provision Improved access to evidence

about AAC Building research capacity

Calculating need (UK)

Conditions

Prevalence ofconditions

% with speech, language and communication needs

% who could benefit from AAC

Systematicliterature review +

practitioners survey

Literature search

Literature search +professional consultation

Literature search +professional consultation

Conditions

People who could benefit from AAC:

0.5% of the population529 people per 100,000 population

% of population

Scotland(5.3m)

UK(63.2m)

Need AAC 0.5% 26,274 316,164

Need powered aids

0.05% 26,554 31,616

Population figures

% of population

Scotland(5.3m)

UK(63.2m)

Need AAC 0.5% 26,274 316,164

Need powered aids

0.05% 2,627 31,616

Population figures

How many people use powered communication aids?

Number of people who currently use powered communication aids

Number of people who could potentially benefit

Potential unmet need

0.05%

0.014%

0.036%

How many people use powered communication aids?

Number of people who currently use powered communication aids

Number of people who could potentially benefit

Potential unmet need

0.05%

0.014%

0.036%23,000 (UK)

ScotlandScotland0.036%0.036%= 1,900= 1,900

medical advances leading to better survival ratesthe ageing UK populationdevelopment of new AAC strategies & aidsrising expectations

A growing need

Project outcomes Increase awareness of the need

for AAC Increase understanding of Increase understanding of

current current AAC provisionAAC provision Improved access to evidence

about AAC Building research capacity

Gathering service data

Geographical coverage

Information about the service• Services provided• Population covered• Links to other services

Equipment/strategies available and in use

Local population

Components of AAC service provision

Custom manufacture

Custom manufacture

AssessmentAssessment FundingFunding TrainingTraining CustomisationCustomisation

Research & DevelopmentResearch &

DevelopmentSupportSupport

Positioning & mounting

Positioning & mounting MaintenanceMaintenance RepairRepair ReviewReview

Information/advice/

education

Information/advice/

education

IntegrationIntegrationLoansLoans

Varied providers A wide range of eligibility criteria Little consistency in the components of

service provision Funding for services & equipment was the

number one issue of concern

Service models

Frustration over the time taken to identify & assess

Funding difficulties Lack of support Lack of technical skills & knowledge

amongst Speech & Language Therapists

The experience of services

Concluded the prevalence of need for AAC at 0.5%

“Gap” for powered communication aid could be affecting 23,000 people in UK & 1,900 in Scotland (2/3rd of those who could benefit)

Proved that AAC service provision is neither consistent or complete across the UK

Produced concepts of what would make up a full and satisfactory service provision

To summarise…

THESE ARE IMPORTANT AND VALUABLE RESEARCH THESE ARE IMPORTANT AND VALUABLE RESEARCH RESULTS THAT WILL HELP THE FIGHT FOR BETTER RESULTS THAT WILL HELP THE FIGHT FOR BETTER

PRODUCT & SERVICE PROVISIONPRODUCT & SERVICE PROVISION

Project outcomes Increase awareness of the need

for AAC Increase understanding of

current AAC provision Improved access to evidence

about AAC Building research capacity

Manchester Metropolitan University

Dr Janice MurrayMichelle Beech

Alan Martin

Project outcomes Increase awareness of the need

for AAC Increase understanding of

current AAC provision Improved access to evidence Improved access to evidence

about about AACAAC Building research capacity

Improved access to evidence about AAC - research questions

1. What type of information is required in the AAC evidence base?

2. In what formats should information be available to support wider access?

Methodology Participatory Action Research Co-researcher Stakeholder involvement Reflective process

AAC Evidence Base website – Focus Groups

Researchers

Family members

Companies

Charities

Speech & language professionals

Personal assistants

People who use AAC

Medical professionals

Education professionals

Key themes - content

A glossary User experiences Technical specifications of AAC systems &

devices Decision-making studies Service provision, funding & policy studies Published case stories Fact sheets Discussion forum

Peer-reviewed articles

A bibliography of AAC articles Links to some articles Working with publishers to secure

more links Plain English summaries

ww.AACknowledge.org.uk

“Wow, it is great! Love the information and accessibility.”

“A terrific new AAC resource”

“A great resource for anyone interested in AAC”

“Lots of good things on the Evidence Base already. Hoping our own project

can contribute one day.”

Looking forward Visit the site & give us your feedback Developing more content Building links with publishers Review at end of first year

Project outcomes Increase awareness of the need

for AAC Increase understanding of

current AAC provision Improved access to evidence

about AAC Building research capacityBuilding research capacity

Building research capacity

The Independent Research Panel The case study template The Research Involvement Network

The Independent Research Panel

Stakeholder representation Oversight of AAC Evidence Base project Advice and guidance on research strategy

and activities

The case study template - aims To capture evidence from

practice To build a bigger picture To support research into AAC

Levels of Evidence

Case study service development

Electronic and paper template created Database created First wave of participants recruited Finalising processes for managing the

service

The Research Involvement Network

The Research Involvement Network - aims

To support research into AAC by building a list of participants

To provide researchers with access to a wider range of participants

To promote the involvement of people who use AAC in all aspects of research

Research Involvement Network development

Investigated models of similar services Consultation with Independent

Research Panel, researchers and others Developed procedures, forms,

marketing Created database

Research Involvement Network Researcher Access

Standard FormsStandard Forms

Independent Research Panel

Independent Research Panel

Researcher

Feedback

Recommendation to CM Trustees

Recommendation to CM Trustees

Research Involvement Network Researcher Access

Standard FormsStandard Forms

Independent Research Panel

Independent Research Panel

Researcher

Feedback

Recommendation to CM Trustees

Recommendation to CM Trustees

No

“Advertise” to RIN members

“Advertise” to RIN members

Yes

Research Involvement Network Researcher Access

Standard FormsStandard Forms

Independent Research Panel

Independent Research Panel

Researcher

Feedback

Recommendation to CM Trustees

Recommendation to CM Trustees

No

“Advertise” to RIN members

“Advertise” to RIN members

Yes

Interested RIN members

Interested RIN members

Research Involvement Network development

Launched September 2011

100 members to date First research project

helped

Evidence

A voice

Knowledge

Change

Approaching the end???

THANK YOU

www.communicationmatters.org.uk/research

www.AACknowledge.org.ukresearch@communicationmatters.org.uk

@Comm_Matters#righttoavoice