What is PPIE and why is it important?

Patient and Public Involvement and Engagement, or PPIE for short, is key to everything we do at HDR UK. It 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. It will also help develop the public’s understanding and has the potential to create ambassadors.

Read our Communications Engagement and Involvement Strategy

Patient and Public Involvement means that activities and research are carried out ‘with’ or ‘by’ members of the public or patients, rather than ‘to’, ‘about’ or ‘for’ them. Patients and members of the public are actively involvement in the development, running and management of research projects or activities. Patient and Public Engagement​ is all about ensuring that information and outcomes from research or activities are disseminated to patients and the public, so that they can be informed of our work. It also allows us to gain insights and input from patients and the public.

Our approach

To really benefit from working with patients, carers and the public, we encourage and support all teams and projects at HDR UK to be set up in a way that allows for meaningful involvement. To support our teams and partners to achieve this, we worked with patients, members of the public, staff members and other expects in the field to develop a set of Guiding Principles.​​

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. This includes work by our Public Advisory Board, public contributors in our Governance structure, involvement of public contributors in the Data and Connectivity National Core Study, and groups and panels set up to support the Health Data Research Hubs and research priorities. Patients and members of the public also get involved with one off opportunities, such as workshops and surveys, to provide their perspectives and help shape our work. 

Get involved

We’ve been working to grow our patient and public involvement and engagement activities, and are keen to work with a wide range of people in as many different projects and areas of our work as possible. You can get involved in as much or as little as you like and through our growing range of opportunities we’ll help find something that suits your needs. If you want to learn more about health data research and how it works, you can view our health data research explained page. ​

Click the button below to sign up to HDR UK Voices, and browse our other pages to find out about opportunities to get involved, and learn about the impact that patient and public involvement has across HDR UK.

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