Patient and public involvement and engagement is vital in the development of different areas of our work, including those where there is a level of uncertainty. Involving patients and members of the public will help us become a trusted voice on these complex issues and will be key in helping build a system that is worthy of their trust and confidence in using health data for research.

How will HDR UK approach this?

Patient and Public Engagement and Involvement both add a lot of value in different ways. Engagement will help develop the public’s understanding and has the potential to create ambassadors for our work. Involvement will take it a step further and ensure the insights, needs and experiences of patients, carers and the public are embedded into our work. This will ultimately help us improve public trust and only take forward research and innovation that is of value to patients and the public.

To really benefit from working with patients, carers and the public, we encourage all teams and projects to be set up in a way that provides the opportunity for meaningful involvement of patients and the public so that they may become truly embedded as members of our HDR UK community. To support our teams and partners achieve this, we worked with patients, members of the public, staff members and others experts in the field to develop a set of Guiding Principles.

What have HDR UK done so far?

Patients and members of the public have been involved in a range of activities across the HDR UK Institute and we’ve seen the impact and value this brings. For example, they have,

  • provided input into strategy development, funding bids and prioritisation of patient and public involvement and engagement activities
  • influenced and developed clear criteria for public engagement to be embedded in our Digital Innovation Hub programme
  • influenced the direction of COVID-19 research and communication and shared their feedback and priorities in our report to SAGE.

This includes work by our Public Advisory Board, lay members in our Governance structure, our newly established COVID-19 Patient and Public Involvement and Engagement Group and groups and panels set up to support the Health Data Research Hubs and science priorities.

We’ll be putting together some case studies to showcase the impact that patients and members of the public have made so watch this space!

Interested in getting involved?

We’ve been working to increase and improve the quality of our patient and public involvement and engagement activities across the HDR UK Institute and are keen to work with a wide range of people in as many different projects and areas of work as possible. You can get involved in as much or as little as you like and we hope to grow to a wide range of opportunities to help you find something that suits your needs.

You don’t need to be pro-access when it comes to health data to get involved either. There is a great value to having a mix of thoughts and opinions – all we ask is that you are respectful of the views of others and have a great level of interest in health data research.

Find out more about the latest opportunities