webinar 1: public involvement in social care research: an overview 14:00-15:00 13 th september 2013...
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Webinar 1: Public Involvement in social care research: An Overview
14:00-15:00 13th September 2013
WithDr Michael Clark, Simon Denegri
& Tina Coldham
School for Social Care Research
19/04/23
Improving the evidence base for adult social care practice
Michael ClarkResearch Programme ManagerM.C.Clark@lse.ac.uk
Webinar 1: Public Involvement in Social Care Research - An Overview
Friday 13 September
School for Social Care Research
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)
School for Social Care Research
About the webinar series
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
1. Growth of attention given to involvement of people in health and social care research.
2. SSCR is committed to making its work as inclusive as possible and promoting good practice.
School for Social Care Research
The context – Adult Social Care
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
School for Social Care Research
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)
School for Social Care Research
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
School for Social Care Research
SSCR and involvement
Involvement in the organisation of SSCR
Who to involve? – service users, carers and practitioners
SSCR Executive
Group
SSCR Advisory
Board
SSCR User, Carer &
Practitioner Reference
GroupUCPRG
11 members
School for Social Care Research
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
School for Social Care Research
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
School for Social Care Research
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.
Public involvement in social care research: an overview
Simon Denegri, Chair, INVOLVE; NIHR National Director for Public Participation and Engagement in Research
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’
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
INVOLVE: a platform for change
How we do it? •Leadership across NIHR•Building and sharing the evidence base•Developing capacity and capability•Influencing policy and practice
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.
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.
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
Danish National Forum for Health Research Study visit(June 2011)
INVOLVE’s mailing list4,000+ people
40+ countries
Responding to individual enquiries from membersof the public, researchers and others
Working with groups
Build and share the evidence base
Evidence Libraryhttp://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 http://www.invo.org.uk/invonet/
A network of 200+ people with a shared interest in researching public involvement in research.
invoNET 2012
Develop capacity and capability
Briefing Notes for Researchers:http://www.invo.org.uk/resource-centre/resource-for-researchers/
INVOLVE Conferencehttp://www.invo.org.uk/resource-centre/conference/
Visit: www.invo.org.uk
Influencing research policy and practice
Payment for involvement
Strategic influence across funders
‘Public involvement in research applications to NRES,’ INVOLVE/NRES Report 2011
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
Thank youSimon.Denegri@nihr.ac.uk
www.invo.org.uk Twitter: @SDenegri
Blog: http://simondenegri.com/
Tina Coldham Service User
Member of INVOLVE
Supporting public involvement in NHS,public health and social care research
Planning public involvement in research
Involve people as early as possible so they
feel part of the research and have a sense
of ownership.
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.
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.
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.
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
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
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
A study of adoption support services
Birth parents were involved in helping to plan the overall design, analyse the data and interpret the findings.
Resources
School for Social Care Research (SSCR) Methods Reviews:
http://sscr.nihr.ac.uk/methodsreviews.php
INVOLVE http://www.invo.org.uk/
ResourcesINVOLVE 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/
Resources
Social Care Institute for Excellence (SCIE)
http://www.scie.org.uk/
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