Arthritis UK joins public involvement pledge

We have joined the Health Research Authority (HRA), the National Institute of Health and Care Research (NIHR), and a host of other leading organisations in a pledge to improve public involvement in research.

We have signed up to the Shared Commitment to Public Involvement, which aims to drive up standards by improving the quality of public involvement across the health and research sector.

Public involvement refers to how the research community works together with people, including people with lived experience, carers, advocates, service users, and members of the public.

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.

Strengthening Research Through Meaningful Public Involvement

Arthritis UK join over 30 leading health and research organisations including, the National Institute for Health and Care Research (NIHR), UK Research and Innovation and Cancer Research UK (CRUK).

Dr Matt Westmore, HRA Chief Executive, says, ‘It’s great to have Arthritis UK join our Shared Commitment to Public Involvement.

We launched the Shared Commitment with other leading organisations to raise the profile, value and importance of public involvement in health and social care research.

Together, we are sending a very strong message to the research system that public involvement in the design and delivery of research is essential and must be taken seriously.’

The evidence is that better research results from involvement, and better research delivers benefits for people living with health conditions.

For many years, we have involved people with lived experience of arthritis in our research decision-making, as well as supporting our researchers to do so directly in their projects. 

Versus Arthritis do not view research involvement as a ‘tick box’ exercise. Involvement is a key element to any research project or department creating equitable and impactful changes to preventing, diagnosing, and treating arthritis. In partnership, we strive to ensure that people living with arthritis can live the lives they choose. 

We expect our researchers to meaningfully involve people at the application and project development stages, and to continue their involvement throughout the project.  We are person-focused and inclusive in the research we support (you can read our research strategy here). 

‘’We are dedicated to making sure that people with lived experience are involved at all stages in the research we fund. We know that involving people in research means it is then more relevant to the challenges and experiences they live with. We are pleased to share our public commitment to work across the sector to share, learn, and improve together.” Lucy Donaldson, Director of Research, Arthritis UK

The Shared Commitment was developed in partnership with the HRA, leading health and social care organisations and members of the public. It launched in March 2022.

It builds on work led by the HRA in response to the reduction in public involvement seen in studies submitted for approval at the start of the COVID-19 pandemic.

The Shared Commitment, which was partially funded by the UK Clinical Research Delivery Programme, includes a joint pledge to help improve the quality of public involvement, which each organisation signs up to.

Evidence shows that excellent public involvement improves the quality and impact of research.

Embedding public involvement in health and social care research

The Shared Commitment 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.’

Organisations that have signed the Shared Commitment can be found here: The Shared Commitment to Public Involvement in health and social care research partners

Join the shared commitment

If you are or work with an organisation from across the health and social care research sector are invited to join our Shared Commitment. Find out how your organisation can get involved.