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

9 March

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

Health and Care Research Wales is working with the Health Research Authority, the National Institute for Health Research and a host of organisations across the UK 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.’

You can find more from each of the signatories – and what they will do - by clicking on the links below:

The shared commitment builds on earlier work, led by the HRA. In January last year the HRA produced a report in collaboration with Health and Care Research Wales and Public Health Agency, 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 which led to public involvement being left out of health and social care research applications.

Professor Kieran Walshe, Director of Health and Care Research Wales said: “Public involvement has always been at the heart of what we do in Wales. We have a great relationship with the HRA, already sharing our experiences of how we made sure the public had a voice through urgent COVID-19 research which ultimately went on to save lives.

“We’re proud to be part of this collaborative group and look forward to building on this commitment by working together developing our research and processes - using real-life experiences to help shape truly meaningful research.”

Eirwen Malin from Wenvoe, who worked as a public contributor for this project said: “It was inspiring and encouraging to be a part of drafting this shared commitment as a public contributor. All the organisations were completely supportive of involving members of the public in research and demonstrated how to do it by valuing and respecting us as full contributors to the discussions.”

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.

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.’

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.

“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.”