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

21/04/23

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/