Our Shared Commitment to Patient and Public Involvement
To ensure our work is driven to deliver benefits to patients and the public and is worthy of public trust and confidence, active and meaningful patient and public involvement is vital.
We’re excited to be joining a range of funders, regulators and research organisations that play an important role in UK health and social care research who, alongside members of the public, have signed up to a bold new shared commitment to improve public involvement in research.
What is the Shared Commitment to improve public involvement in research?
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.
What will HDR UK do to improve patient and public involvement in health and care research?
Across the HDR UK community, we are committed to continuously improving our work with patients, carers, communities and the public. As part of our own Commitment, HDR UK will:
- actively work with the public as partners in our decision making processes so that we may identify and address complex and challenging issues around the access and use of data for research and ensure our work is driven by the public’s needs
- work and learn from experts in the field to design and deliver a proactive action plan, that includes community engagement approaches, to enable better and more open opportunities for the diverse UK population to direct, influence and shape our work
- collaborate with researchers and organisations across the data sector to ensure consistent and joined up meaningful patient and public involvement, for example through the Public Engagement in Data Research Initiative
- provide training, guidance and real-life examples to researchers and those in the sector looking to embed patient and public involvement in health data research
- enable shared learning across the HDR UK community and beyond where we can learn from honest and constructive feedback and address gaps that will enable active patient and public involvement across our work – we do not have all of the answers so it is important we learn from each other
What other organisations are involved?
This Shared Commitment provides a unique opportunity to bring together patients, public contributors and leaders in health and social care to actively set out the importance of public involvement in research with the ambition of delivering better health and social care. Organisations who have signed the Shared Commitment include:
The Association of the British Pharmaceutical Industry (ABPI)
The Association of Medical Research Charities (AMRC)
The Academy of Medical Sciences (AMS)
Chief Scientist Office NHS Research Scotland
Health and Care Research Wales (HCRW)
Health Research Authority (HRA)
Health and Social Care Northern Ireland (HSCNI)
Medicines and Healthcare products Regulatory Agency (MHRA)
The National Coordinating Centre for Public Engagement (NCCPE)
National Institute for Health and Care Research (NIHR)
NIHR Applied Research Collaborative North East and North Cumbria (NIHR ARC NE&NC)
UK Research and Innovation (UKRI)
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