Communication Matters – Research Matters: an AAC Evidence Base

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

2. CAP Project SCOPE’s No Voice, No Choice campaign Scottish Govt. engages Bercow report Government’s “Better Communication Action Plan” published

3. “…what is the need?” “…post code lottery… “…no funds available… “…no money…” “…we can only fund 2 devices…” “…post code lottery…

4. Communication Matters – our aims Increase awareness of AAC Enable the exchange of information & ideas Support research into AAC Empower people with complex communication needs

5. £468k grant from Big Lottery Fund UK-wide research High-tech & low-tech AAC Started June 2010 (ends June 2013) The AAC Evidence Base project

6. Project outcomes Increase awareness of the need for AAC Increase understanding of current AAC provision Improved access to evidence about AAC Building research capacity

7. Simon Judge Professor Pam Enderby Dr Janice Murray Project team Katie Holmes David Morgan

8. Communication Matters – Research Matters: an AAC Evidence Base May 2013 David Morgan

9. @Comm_Matters #righttoavoice #AAC #research

11. Project outcomes Increase awareness of the need for AAC Increase understanding of current AAC provision Improved access to evidence about AAC Building research capacity

12. The research team Professor Pam Enderby Dr Sarah Creer Dr Alex John Simon Judge Dr Susan Baxter

13. The data mountain

14. Practitioners survey Interviews Literature searches Health database searches Online surveys Focus groups Online surveys Scoping survey Systematic literature review involving Professionals Voluntary sector Communication partners Commissioners & policy makers People who use AAC AAC industry

15. Project outcomes Increase awareness of the need for AAC Increase understanding of current AAC provision Improved access to evidence about AAC Building research capacity

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

17. Conditions

18. People who could benefit from AAC: 0.5% of the population529 people per 100,000 population

19. Population figures

20. Population figures

21. How many people use powered communication aids? Number of people who could potentially benefit 0.05% 0.036% Potential unmet need Number of people who currently use powered communication aids 0.014%

22. How many people use powered communication aids? Number of people who could potentially benefit 0.05% 0.036% 23,000 (UK) Potential unmet need Scotland 0.036% = 1,900 Number of people who currently use powered communication aids 0.014%

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

24. Project outcomes Increase awareness of the need for AAC Increase understanding of current AAC provision Improved access to evidence about AAC Building research capacity

25. 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

26. Components of AAC service provision Assessment Funding Training Customisation Review Positioning & mounting Maintenance Repair Support Research & Development Custom manufacture Information/ advice/ education Loans Integration

27. Service models 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

28. The experience of services Frustration over the time taken to identify & assess Funding difficulties Lack of support Lack of technical skills & knowledge amongst Speech & Language Therapists

29. To summarise… 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 THESE ARE IMPORTANT AND VALUABLE RESEARCH RESULTS THAT WILL HELP THE FIGHT FOR BETTER PRODUCT & SERVICE PROVISION

30. Project outcomes Increase awareness of the need for AAC Increase understanding of current AAC provision Improved access to evidence about AAC Building research capacity

31. Manchester Metropolitan University Dr Janice Murray Michelle Beech Alan Martin

32. Project outcomes Increase awareness of the need for AAC Increase understanding of current AAC provision Improved access to evidence about AAC Building research capacity

33. Improved access to evidence about AAC - research questions What type of information is required in the AAC evidence base? In what formats should information be available to support wider access?

34. Methodology Participatory Action Research Co-researcher Stakeholder involvement Reflective process

35. Medical professionals Researchers Charities Personal assistants AAC Evidence Base website – Focus Groups People who use AAC Family members Companies Speech & language professionals Education professionals

36. 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

37. Peer-reviewed articles • A bibliography of AAC articles • Links to some articles • Working with publishers to secure more links • Plain English summaries

38. ww.AACknowledge.org.uk

39. “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.”

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

41. Project outcomes Increase awareness of the need for AAC Increase understanding of current AAC provision Improved access to evidence about AAC Building research capacity

42. Building research capacity The Independent Research Panel The case study template The Research Involvement Network

43. The Independent Research Panel Stakeholder representation Oversight of AAC Evidence Base project Advice and guidance on research strategy and activities

44. The case study template - aims To capture evidence from practice To build a bigger picture To support research into AAC

45. Levels of Evidence

46. Case study service development • Electronic and paper template created • Database created • First wave of participants recruited • Finalising processes for managing the service

47. The Research Involvement Network

48. 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

49. Research Involvement Network development • Investigated models of similar services • Consultation with Independent Research Panel, researchers and others • Developed procedures, forms, marketing • Created database

50. Research Involvement Network Researcher Access Standard Forms Researcher Independent Research Panel Feedback Recommendation to CM Trustees