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Public involvement and social care research - a new dawn

Zoe Gray, Associate Director of Involvement, Participation and Engagement, NIHR Centre for Engagement and Dissemination (CED); and Tina Coldham, Public Adviser to NIHR CED urge researchers, research commissioners and managers to play a part in improving public involvement in social care research. It follows publication of an NIHR report highlighting recommendations in this area.

Beginnings

When we think of research we often think of clinical research and the effort to eradicate disease. This has been placed into ever sharper focus recently due to the Covid-19 pandemic. However, the pandemic also showed that better care and support are as important as clinical care.

Awareness about the importance of social care is growing amongst the wider population. Not only does good social care keep older people living happier and healthier lives longer, it enables children and working-age adults with social care needs to take part in society and fulfil their potential. There are subtle differences in how we view and talk about people engaging with social care compared to clinical care. For example, people are called ‘service users’ of social care. This places people on a more equal footing with services, whereas in clinical care the term ‘patient’ is sometimes seen as a more passive recipient of them.

On the horizon

Social care has long been a testing ground for different approaches to involving people in improving their care, encouraging co-production, user-led and multidisciplinary knowledge to be a key part of delivering and shaping services. Social care research has tried to put the people affected by services at the heart of deciding priorities and doing the actual research. In addition, social care has tended to value participatory and user-led research more than clinical research has.

It could be said that patient and public involvement in clinical research has a lot to learn from service user involvement in social care research. This is despite social care research not always benefiting from the same level of investment or capacity building. However, this is now changing at pace. For example, through the NIHR School for Social Care £15 million will be invested over five years.

NIHR has identified building capacity and capability in social care research as one of its areas of strategic focus in the newly published Best Research for Best Health: The Next Chapter. The new UK-wide Saving and Improving lives: The Future of UK Clinical Research Delivery implementation plan, also provides a timely reminder of the importance of “strengthening public, patient and service user involvement in research” (one of the seven action areas set out in the plan).

It couldn’t be a better moment for researchers and those commissioning and managing research to engage with, and help drive forward, the recommendations made by the Social Care Institute for Excellence in a newly published report focused on public involvement in social care. The findings speak to four main themes, which are detailed more fully in the report:

  • Continuing to embed strong public partnerships in NIHR social care research
  • Needing to champion Equality, Diversity and Inclusion
  • Engaging communities and supporting user-led research
  • Providing accessible, practical and relevant resources

A bright day

These themes have already guided NIHR in making progress over the last year, but there is much more to do. The NIHR CED, for example, as part of its role coordinating and providing leadership on public partnerships work in NIHR, aims to curate accessible and practical resources that help researchers, service users and carers to understand what is possible in involvement and co-production, including in social care settings.

The Centre is also currently:

  • Working with partners to lead a cross-UK project to overcome institutional barriers, initially to address payment barriers for public contributors
  • Starting to highlight more real-life case studies of co-production in health and social care research
  • Planning a project working with carers (a gap identified in NIHR public contributors from a 2018 survey) to identify how NIHR can better involve them in designing and delivering research.

As improvements in public involvement are always achieved by team effort at all levels, we would encourage everyone working in, or connected with, social care research to share this report, to engage with us about its findings, and to make a personal pledge to act upon the learning.

Zoe Gray, Associate Director of Involvement, Participation and Engagement, NIHR Centre for Engagement and Dissemination (CED); and Tina Coldham, Public Adviser to NIHR CED 

 


The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR or the Department of Health and Social Care.