With Dr Michael Clark, Simon Denegri & Tina Coldham

1. Webinar 1: Public Involvement in social care research: An Overview14:00-15:00 13th September 2013 With Dr Michael Clark, Simon Denegri   & Tina Coldham

2. Improving the evidence base for adult social care practice Webinar 1: Public Involvement in Social Care Research - An Overview Friday 13 September Michael Clark Research Programme Manager M.C.Clark@lse.ac.uk

3. The Webinar Agenda 'Context': Dr Michael Clark (Research Programme Manager, SSCR) 'The Need': Simon Denegri (Chair of INVOLVE, NIHR National Director for Public Participation and Engagement in Research) 'Good practice': Tina Coldham (service user; member of INVOLVE)

4. 1. Growth of attention given to involvement of people in health and social care research. About the webinar series 2. SSCR is committed to making its work as inclusive as possible and promoting good practice. 3. The webinar series will draw on SSCR’s work, and NIHR’s and Involve’s experience to promote understanding of good practice in involvement. SSCR - sscr.nihr.ac.uk/ Involve - www.invo.org.uk/ NIHR – http://www.nihr.ac.uk For updates on SSCR activities join the mailing list – email sscr@lse.ac.uk

5. Adult Social Care: • Over 16 years of age • Non-universal services • Central policy making, local implementation • A wide range of needs and client groups • Care is delivered in a range of settings • Mixed economy of provision • Mixed funding - growth of self funders • Diverse workforce • …1.8 million people employed in the care and support workforce • Over 20,000 Social workers • Plus Nurses and Occupational Therapists • Large non-professionalised workforce • Personal Assistants The context – Adult Social Care

6. The context - SSCR • About SSCR: • Established by NIHR in 2009 with a 5 year contract • To develop the evidence base for adult social care practice in England by commissioning and conducting world-class research • Intramural research (6 academic units – LSE, King’s College London, Universities of Kent (PSSRU and Tizzard), Manchester, York • Extramural research, externally commissioned by us, across England • Portfolio of 57 projects across adult social care • NIHR is in the process of renewing and • refreshing the membership of SSCR for a new contractual period (2014-9)

7. SSCR – why do involvement? • Some reasons we promote involvement: • Being inclusive • Helping to ensure work is relevant • Impact is linked to a process of ongoing engagement

8. SSCR and involvement Involvement in the organisation of SSCR Who to involve? – service users, carers and practitioners SSCR Executive Group 11 members SSCR User, Carer & Practitioner Reference Group UCPRG SSCR Advisory Board

9. UCPRG • The work UCPRG and its members: • Advise the School on its business e.g. framing priorities for research and calls for applications. • Review research applications. • Review reports • Participate in SSCR activities e.g. workshops, conferences • Are important in guiding our impact work • Meet twice a year, but very active between time • People paid as appropriate for their work • People develop their interests as they want – e.g. joining the Social Care Research Ethics Committee, projects steering groups, participating in bids to other funders

10. SSCR & involvement in our projects • Involvement in our research projects • All projects are required to have an appropriate level of UCP involvement before being commissioned • Every project has an Executive mentor – can support involvement work • Across 17 of our portfolio of projects: • 20 people with experience of using services on advisory groups and/or as researchers; • 16 carers; • Extensive involvement of national bodies representing people who use services, or are carers, (e.g. Age UK, MIND, Mencap) • Many local organisations representing/working with, social care client groups, such as BME groups, homeless people, older people

11. SSCR – other involvement work Promoting an inclusive view of social care research • We have commissioned a range of review papers, several about being inclusive in research: • Research with black and minority ethnic people using social care services • Research with d/Deaf people • Research about social care services for visually impaired people • Interviewing people with dementia • User controlled research • People with learning disabilities working as researchers • This webinar series will run over the next 6 months and will draw on these papers.

12. Public involvement in social care research: an overview Simon Denegri, Chair, INVOLVE; NIHR National Director for Public Participation and Engagement in Research

13. Public involvement in UK health research • Core principle of National Institute for Health Research (NIHR) • NIHR leadership based on evidence of public involvement driving research quality • NIHR funding for national advisory group – INVOLVE - has given agenda strong platform • Success built on ‘partnership’ working • Clear expectation set with research community • A ‘deal-breaker’ and ‘marriage maker’

14. INVOLVE: a platform for change What we aspire to: A dynamic partnership between the public, researchers and others, to advance NHS, public health and social care research and improve the health and well being of the population A national advisory group established in 1996 and funded by, and part of, the National Institute for Health Research (NIHR) www.invo.org.uk • How we do it? • Leadership across NIHR • Building and sharing the evidence base • Developing capacity and capability • Influencing policy and practice

15. A working definition of public involvement INVOLVE defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials, undertaking interviews with research participants.

16. Examples of public involvement •  as joint grant holders or co-applicants on a research project •  involvement in identifying research priorities •  as members of a project advisory or steering group •  commenting and developing patient information leaflets or other research  materials •  undertaking interviews with research participants •  user and/or carer researchers carrying out the research.

17. Leading on public involvement across NIHR • INVOLVE supports shared learning groups for public involvement with: • NIHR Research • Programmes • NIHR Research • Design Service • NIHR Collaborations • for Leadership • in Applied Health • Research and Care Sharing knowledge and experience Working with groups Danish National Forum for Health Research Study visit (June 2011) Responding to individual enquiries from members of the public, researchers and others INVOLVE’s mailing list 4,000+ people 40+ countries

18. Build and share the evidence base invoNET http://www.invo.org.uk/invonet/ A network of 200+ people with a shared interest in researching public involvement in research. Evidence Library http://www.invo.org.uk/resource-centre/evidence-library/ An on line database of 200+ lay summaries of reports on the nature, extent, impact and reflections on public involvement in research. invoNET 2012

19. Develop capacity and capability Briefing Notes for Researchers: http://www.invo.org.uk/resource-centre/resource-for-researchers/ Visit:www.invo.org.uk INVOLVE Conference http://www.invo.org.uk/resource-centre/conference/

20. Influencing research policy and practice Payment for involvement

21. Strategic influence across funders ‘Public involvement in research applications to NRES,’ INVOLVE/NRES Report 2011

22. The future looks like…. Leadership, evidence, capacity, influence • Focus on ‘quality’ • Strategic co-ordination • Visibility and momentum • Governance and accountability • Collaboration and partnership in key areas

23. Thank you Simon.Denegri@nihr.ac.uk www.invo.org.uk Twitter: @SDenegri Blog: http://simondenegri.com/

24. Tina Coldham Service User Member of INVOLVE Supporting public involvement in NHS,public health and social care research

25. Planning public involvement in research Involve people as early as possible so they feel part of the research and have a sense of ownership.

26. Be clear with the people you want to involve • explain why you want people to get involved • develop a job description • be clear about time commitment • be clear about what they can expect from you • develop terms of reference for any advisory group or committee • discuss at an early stage how much influence people will be able to have.

27. Be accessible • write clearly and simply using a friendly style and avoid jargon • ask people how you can meet their specific accessibility needs • ensure fees and expenses are paid promptly • consider where you are going to hold meetings and if the venue is accessible • do not assume people have access to computers and printers.

28. Resource public involvement in your research For example you might need to consider: • travel and subsistence costs • childcare and carer costs • costs for personal assistants • hire of accessible venues • refreshments • payment for time and work undertaken • training and support • attendance at conferences and events.

29. Offer training and support • attending courses or training sessions • ‘on the job’ training • sharing knowledge and experiences with colleagues • a mentor • team or one to one meetings

30. Organisational responsibilities Examples of issues you might need to consider are : • payment and expenses policies • travel and expenses claim forms • confidentiality agreements • health and safety

31. An assessment of the accommodation and social care needs of gypsies and travellers • members of a national gypsy and traveller communities were involved in the steering group • local gypsies and travellers were trained as peer interviewers

32. A study of adoption support services Birth parents were involved in helping to plan the overall design, analyse the data and interpret the findings.

33. Resources School for Social Care Research (SSCR) Methods Reviews: http://sscr.nihr.ac.uk/methodsreviews.php INVOLVE http://www.invo.org.uk/

34. Resources INVOLVE briefing notes for researchers: http://www.invo.org.uk/resource-centre/resource-for-researchers/ Turning the pyramid upside down: examples of public involvement in social care research http://www.invo.org.uk/posttypepublication/turning-the-pyramid-upsidedown-examples-of-public-involvement-in-social-care-research/ Budgeting for public involvement in research http://www.invo.org.uk/resource-centre/involvement-cost-calculator/

35. Resources Social Care Institute for Excellence (SCIE) http://www.scie.org.uk/