What is PPIE?

Patient and Public Involvement and Engagement, or PPIE for short, is key to everything we do at HDR UK. It can be separated into two parts – Involvement and Engagement.

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.

Why is PPIE important?

public advisory boardPPIE 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​.​

Get involved

Patient and public involvement and engagement is for everyone. Whether you have never done it before or don’t know much about health data research, we want to hear from you! Only by including a wide range of perspectives across our work can we ensure that patients and the public can have confidence in the access to and use of health data for research.

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. 

Join our HDR UK Voices Network and use your voice to make a difference

“The object of health data research is to improve patients’ lives and this is impossible without PPIE. Unless researchers engage and involve actual patients, how will they know what improvement really looks like? Health data research uses patient data, and patients should be involved in decisions about how and what it is used for. It is a basic courtesy that should be adhered to in all research. Patients graciously give permission for their data to be used and they should be afforded the opportunity to be involved in deciding on its application.” – Rosanna Fennessey, Public Contributor for the Gut Reaction Health Data Research Hub.

If you would like to speak to someone in the Patient and Public Involvement and Engagement team directly, please email Involvement@hdruk.ac.uk.

Find out more

  • 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. 

    “Researchers have the tools and analytical expertise, but patients and their families have the lived experience to put it all into context. Combining forces can help to identify research questions that will have the biggest impact on these patient communities, and to make new discoveries that may not have surfaced otherwise.” Jillian Hastings-Ward, Science and Infrastructure Delivery Group Public Contributor.

    Read our Communications Engagement and Involvement Strategy

  • The National Institute for Health Research (NIHR) have the Learning for Involvement webpage, where you can find information and resources about carrying out Patient and Public Involvement and Engagement.

    NIHR Learning for Involvement