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

CAP Project Bercow report SCOPE’s No Voice, No Choice campaign Government’s “Better Communication Action Plan” published Scottish Govt. 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 Fund UK-wide research High-tech & low-tech AAC Started 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 Janice Murray Simon Judge Katie Holmes David Morgan

Communication Matters – Research Matters: an AAC Evidence Base May 2013 David 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 Enderby Dr Sarah Creer Dr Alex John Simon 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 for AAC  Increase awareness of the need for AAC  Increase understanding of current AAC provision  Improved access to evidence about AAC  Building research capacity

Calculating need (UK) Conditions Prevalence of conditions % with speech, language and communication needs % who could benefit from AAC Systematic literature review + practitioners survey Literature search Literature search + professional consultation Literature search + professional consultation

Conditions

People who could benefit from AAC: 0.5% of the population 529 people per 100,000 population

% of population Scotland (5.3m) UK (63.2m) Need AAC0.5%26,274316,164 Need powered aids 0.05%26,55431,616 Population figures

% of population Scotland (5.3m) UK (63.2m) Need AAC0.5%26,274316,164 Need powered aids 0.05%2,62731,616 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) Scotland0.036% = 1,900

 medical advances leading to better survival rates  the ageing UK population  development of new AAC strategies & aids  rising expectations A growing need

Project outcomes  Increase awareness of the need for AAC Increase understanding of current AAC provision  Increase understanding of current AAC 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 Assessment Funding Training Customisation Research & Development Support Positioning & mounting Maintenance Repair Review Information/ advice/ education Information/ advice/ education Integration Loans

 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 (2/3 rd 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 RESULTS THAT WILL HELP THE FIGHT FOR BETTER PRODUCT & 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 Murray Michelle Beech Alan Martin

Project outcomes  Increase awareness of the need for AAC  Increase understanding of current AAC provision  Improved access to evidence about AAC  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 capacity  Building 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 Systematic reviews Randomised controlled trials Cohort studies Case control studies Descriptive studies e.g. single case studies Expert opinion, textbooks ?

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 Forms Independent Research Panel Researcher Feedback Recommendation to CM Trustees

Research Involvement Network Researcher Access Standard Forms Independent Research Panel Researcher Feedback Recommendation to CM Trustees No “Advertise” to RIN members Yes

Research Involvement Network Researcher Access Standard Forms Independent Research Panel Researcher Feedback Recommendation to CM Trustees No “Advertise” to RIN members Yes 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 /research #righttoavoice