With more and more research around COVID-19, it’s vital the patient and public perspective is incorporated throughout, including key decision making. Given the fast pace of the COVID-19 response, we knew we had to create a Patient and Public Involvement (PPI) group who will be on hand for members of the HDR UK community to approach and get involved in all different areas of our COVID-19 work.

Whilst their primary focus will be to help shape our approach to data access (as outlined in our strategy), they will also have a role to play in our research question prioritisation process, developing research projects and our communication.

Who are they?

Our group of 62 members have all been recruited through a whole range of existing networks which include:

  • Public Advisory Board at HDR UK
  • Health Data Research Hub PPI Reps
  • HDR UK Science Priorities PPI Networks
  • useMYdata members
  • British Heart Foundation and Cancer Research UK Joint Patient Data Reference Panel

Our COVID-19 PPI group have a range of backgrounds and experiences to ensure we incorporate a diverse group of voices and views as they help to shape our work. The key feature they have in common is that each and every member has an interest in health data and wants to use their experiences and views to move health data research into COVID-19 in a positive direction.

What have they been involved in already?

Within the first month they shared their thoughts and ideas on our COVID-19 strategy and communication and have started helping us with our data access work. By sharing their questions and/or concerns around data access and, in particular, accelerated access to data they’ve been helping us determine if it’s a lack of information that is available or if it’s something we need to delve into deeper.

A clear example of their impact was with the development of an app to estimate the possibility of death based on previous health factors. The initial feedback and input from the group has altered the future focus for this piece of work, truly showing the value of involving patients and the public from the beginning of research projects.

“In my experience of working with different PPIE panels for research over the last 10 years this ranks among the most rapid, extensive and useful!” – Harry Hemingway, HDR UK Research Director for Human Phenome Strategic Priority

How does it work?

If you would like to work with them (or a small group of them) to help shape and develop a piece of work please contact Sinduja Manohar (Public Engagement and Involvement Officer) at Sinduja.Manohar@hdruk.ac.uk who can advise you on the approach and help put you in touch with the group. We will soon be moving the group onto Slack so that researchers, innovators and other members of the HDR UK community can interact with them directly but will keep you updated.

For regular updates on our progress, have a look at our website, social media (follow @HDR_UK on Twitter) and our monthly newsletter.