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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???
