Health and social care leaders unite to improve public involvement in research

Funders, regulators and research organisations who play an important role in UK health and social care research have come together, working with members of the public, to sign up to a bold new shared commitment to improve public involvement in research.

HSC R&D Division in Public Health Agency, the Health Research Authority, the National Institute for Health Research and a host of organisations across the UK are committed to bring about changes which will drive up standards in health and social care research.

The statement, signed by leaders at each organisation, reads:

‘Public involvement is important, expected and possible in all types of health and social care research.

Together our organisations and members fund, support and regulate health and social care research. This statement is our joint commitment to improve the extent and quality of public involvement across the sector so that it is consistently excellent.

People have the right to be involved in all health and social care research. Excellent public involvement is an essential part of health and social care research and has been shown to improve its quality and impact. People’s lived experiences should be a key driver for health and social care research.

When we talk about public involvement, we mean all the ways in which the research community works together with people including patients, carers, advocates, service users, and members of the community. Excellent public involvement is inclusive, values all contributions, ensures people have a meaningful say in what happens and influences outcomes, as set out in the UK Standards for Public Involvement.

Working together we will support the research community to carry out excellent public involvement.  We will provide or share guidance, policies, systems, and incentives. We will:

• listen to and learn from the people and communities we involve and apply and share that learning
• build and share the evidence of how to involve the public and the impact this has
• support improvements in equality, diversity, and inclusion in public involvement
• promote the UK Standards for Public Involvement

We will embed this commitment into the decision-making processes of our organisations.’

Professor Ian Young, Chief Scientific Advisor and Director of HSC Research and Development, said: “I am delighted that through this UK wide initiative, public involvement is being highlighted as an important and essential component of Health and Social Care research in ensuring that the quality of research is improved and that the results will be more meaningful to patients and their carers.

“HSC R&D has been committed to the involvement of the public as partners in research for many years but COVID-19 has reinforced its value as we continue to work together to recover and rebuild our research infrastructure. This collaboration will enable us to work with partners across the UK to ensure that the public have a central role in all Health and Social Care research.”

Lord Kamall, Minister for Technology, Innovation and Life Sciences, said: “Today’s sector-wide public commitment makes a strong statement that the organisations signing up, led by the Health Research Authority (HRA) and National Institute for Health Research (NIHR), recognise and welcome the importance of involving the general public in health and social care research .

“We want the UK to be one of the best places in the world to invest in a life-science business and to deliver research that benefits everyone.  The key to this is to develop stronger partnerships between research and patients and the wider public.  Involving the public in research will help researchers conduct better studies that are open to everyone.  Such inclusive research will enable the UK to deliver more world-leading, life-changing breakthroughs in science and improvements, which in turn will improve the health of our nation.”

Dr Matt Westmore, HRA Chief Executive, said: “Excellent public involvement is an essential part of excellent health and social care research. It improves research and people have a right to be involved.

“This shared statement, developed with patients, research participants and leaders in health and social care research, will ensure public involvement is embedded across the health and social care research system.

“For the first time the entire research system is sending the same strong message. That public involvement is always important, always expected and always possible. The evidence is that better research results from involvement, and better research delivers benefits for patients.

“It also says that together we are stronger – the 13 influential leaders in health and social care research are stronger together - the public and the research community are stronger together. And together we will bring about real change.”

Mrs Margaret Grayson, public contributor and member of Public Involvement Enhancing Research (PIER) Northern Ireland, said: “It has been exciting to have been part of this partnership, collaborating with funders and researchers to develop the statement in this UK wide process. I believe research is the basis for improvement and innovation within health and social care and this means that research impacts on the wellbeing of our whole population in Northern Ireland. Public involvement is integral to the quality and strength of research. Collaborative working and blending together the expertise of the researchers and my lived experience as a patient ensures research outcomes that bring benefit to both patients and to the Health and Social Care in Northern Ireland.”

The shared commitment builds on earlier work, led by the HRA. In January last year the HRA produced a report, on their public involvement matching service which was set up in response to the drastic reduction in public involvement seen in studies submitted for approval at the start of the COVID-19 pandemic. The team wrote a report entitled Public Involvement in a Pandemic, which highlighted four gaps that had led to public involvement being left out of health and social care research applications.

The shared commitment aims to address the gaps identified in leadership and communication by bringing patients and public contributors and leaders in health and social care together to actively set out the importance of public involvement in all health and social care research with the ambition of delivering better health and social care.

Other organisations are invited to sign up to the statement. For more information, please email publicinvolvement@hra.nhs.uk.