Public involvement in care research

NIHR SSCR involves people with social care needs, carers and professionals in a wide range of School activities. Their contributions have already been significant to shaping our activities and research studies, and they will be pivotal to the future effectiveness of care-related research within and beyond NIHR SSCR. We therefore welcome the National Institute for Health Research’s (NIHR) publication this week of a report on public involvement in social care research.

The Social Care Institute for Excellence (SCIE) was commissioned by the NIHR in 2019 to produce a report identifying good practice in user, carer and public involvement in social care research, exploring differences between involvement in health care and in social care research, and highlighting opportunities for further work.

The report sets out a number of key recommendations including: committing to continue to embed strong public involvement and engagement in NIHR social care research; championing equality, diversity and inclusion; engaging communities and supporting user-led research; and providing accessible, practical and relevant resources.

These recommendations will continue to support NIHR and others to ensure social care research is prioritised, designed and undertaken in partnership with users, carers and the public, so that future services can better meet the diverse needs of people and communities.

The School’s Associate Director and Involvement Lead, Professor David Abbott, who co-wrote the foreword for the report, shares his thoughts:

This report reads as authentic and challenging to me – written and informed by people who have thought a lot about public involvement in research. The very welcome expansion of social care research funding can provide more opportunity for collaboration and coproduction. But it’s not a given. The authors highlight that, ‘… there was considerable scepticism about the authenticity of co-production in a research context…’ – and there is an on-going risk of complacency and tokenism when it comes to power relationships within research collaborations. Who handles the money remains such a big and important question and I am glad to see the renewed commitments to supporting user-led research and wider capacity building, training and support for collaborative adult social care research within (and also beyond) NIHR SSCR.

Read the full report: Public Involvement in Social Care Research

Read the NIHR’s blog on the report: Public involvement and social care research – a new dawn

Brief reflections on the School activities to address the report’s recommendations

Public involvement is a key feature of NIHR SSCR and is vital to all of our research and research capacity development activities. Our research studies are required to include appropriate involvement in developing their proposal and in the study; all proposals are reviewed by a public advisor and our Commissioning Panels involve two public advisors. We will be sharing examples of involvement across the School’s research, including user-led and co-produced studies, over the coming months.

We will continue to work with NIHR colleagues to share advice and our experiences of embedding effective public involvement and engagement in social care research. We continue to draw on the expertise of the many people involved in the School’s activities to support this.

We will continue to partner with the NIHR Research for Social Care call and the NIHR Policy Research Unit in Adult Social Care to support public involvement and engagement in NIHR social care research.

We recently refreshed membership of our User, Carer and Practitioner Reference Group (UCPRG) and are working with the Group to further develop our activities. We will continue to discuss with the other two NIHR Schools (for Primary Care and Public Health) options for further developing inclusive public involvement and engagement across all School activities.

We are continuing to support developments to remove the significant barriers within universities for finance and payment arrangements for public involvement. We will publicise refreshed guidance from the NIHR Centre for Engagement and Dissemination (CED) on payments.

• Theme 3: Engaging communities and supporting user-led research

The number of School-funded research studies that are in collaboration with users, carers and/or practitioners continues to increase, and our career development funding opportunities attract people who use services, carers and social care professionals. We are currently funding scoping work to explore ways in which we, and other funders, can build capacity for user-led and co-produced social care research.

Our research studies, members of the School’s community and our UCPRG are developing or adapting, accessible, practical and relevant resources to support public involvement and engagement in research. We will be drawing together these resources over the coming months to make them available to the wider social care research community. We will support NIHR CED to curate, update and disseminate NIHR guidance on public involvement, engagement and participation.

We will continue to work with our UCPRG and members of the School’s community involved in our research to improve the accessibility of all of our activities (such as through live subtitles and British Sign Language interpreters for events) and share learning and practice across NIHR and the social care research community.

At the heart of all of our activities will remain recognition of the important role that people who use services, carers and social care professionals have in ensuring that the research we commission continues to improve the evidence base for adult social care in England, and thereby improves care and support.