Webinar 1: Public Involvement in social care research: An Overview

14:00-15:00 13 th September 2013

With Dr Michael Clark, Simon Denegri & Tina Coldham

School for Social Care Research 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 [email protected]

24/04/2020

The Webinar Agenda School for Social Care Research '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)

About the webinar series School for Social Care Research

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.

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 [email protected]

The context – Adult Social Care School for Social Care Research 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 - SSCR School for Social Care Research 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)

SSCR – why do involvement?

School for Social Care Research Some reasons we promote involvement:

•Being

inclusive

•Helping to ensure work is

relevant

•

Impact

is linked to a process of

ongoing engagement

SSCR and involvement School for Social Care Research Involvement in the organisation of SSCR

Who to involve? – service users, carers and practitioners

SSCR Executive Group 11 members SSCR Advisory Board SSCR User, Carer & Practitioner Reference Group UCPRG

UCPRG School for Social Care Research 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

SSCR & involvement in our projects School for Social Care Research 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

SSCR – other involvement work School for Social Care Research 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 p

eople • • • 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’

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

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 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

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

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/

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 you

[email protected]

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/

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/

Resources

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