Dementia UK signs public involvement research pledge

What is the Shared Commitment?

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.

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

Dementia UK’s commitment to involving people with dementia and families in our research

At Dementia UK, we are dedicated to supporting research that will improve the lives of people with dementia and their families and strengthen the evidence base for specialist Admiral Nursing.

Involving people with lived experience of dementia, service users, carers, families, Admiral Nurses and communities enriches the relevance, quality and impact of research. This includes working closely with our Lived Experience Advisory Panel (LEAP): a group of people living with dementia and family carers.

As part of the Shared Commitment to Public Involvement, we are committed to:

• co-designing research with public involvement from the earliest stages, ensuring their voices shape research questions, design, delivery and dissemination
• valuing lived experience as a form of expertise equal to academic and clinical knowledge
• creating inclusive opportunities for involvement that are accessible, respectful and responsive to diverse needs and perspectives
• providing support and feedback to public contributors, recognising their time, contributions and impact
• embedding our LEAP members in governance and decision making, including ethics reviews, priority setting and evaluation
• reflecting and learning from public involvement activities to continuously improve practice and share learning with others
• upholding our Shared Commitment to Public Involvement along with the Health Research Authority, National Institute for Health and Research and other organisations who are part of the Commitment

This commitment reflects our belief that research should be done with and for people affected by dementia – not just about them.

The Shared Commitment statement

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.