What is Patient and Public Involvement and Engagement (PPIE)?

Working with patients and the public to shape our research, and engage with it, is known as Patient and Public Involvement and Engagement, or PPIE for short. It’s key to everything we do at HDR UK. Here’s a breakdown of what it means.

Patient and Public Involvement and Engagement is for everyone. Whether you’re a member of the public who’s new to health data, or a researcher wanting to find out how to involve the public. We can help!

Why is it so important that patients and the public get involved?

By involving and engaging the public, we can make sure that research data is used for patient and public benefit. But don’t take our word for it, here’s what some of our members think.

“It made sense to me that if you involved patients and public in research, it would be much better at really meeting their needs. That’s what led me to getting involved in research myself.”


Lynn Laidlaw, Patient and public contributor and patient researcher


“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.

You can read their stories and more by visiting our patient and public involvement and engagement opinion pages.

Our patient and public opinion pieces

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

How we work with patients and the public

We’re proud of how we involve and engage patients and the public in health data research. We do this in a number of ways by:

  • Implementing feedback from our Public Advisory Board
  • Inviting members of the public to workshops to ask for their opinions, so that we can develop and improve our work
  • Releasing opinion surveys to gain diverse wider public feedback
  • Creating public events to try and reach members of the public that we haven’t before, such as underserved communities to ensure their voices are heard

When we involve patients and members of the public, we often provide payment for their contributions. You can find guidelines for these payments here: HDR UK Honoraria and Expenses PPIE Policy If you have any questions, please feel free to let us know at honoraria@hdruk.ac.uk.

Find out more

  • At HDR UK, we can only achieve our vision and strategy if patients and the public trust, and have confidence in, the safe access and use of health data for research and innovation. To support this, the Public Advisory Board sits within HDR UK’s governance structure to provide strategic advice to HDR UK.

    Our Public Advisory Board has been in place since January 2019. They make sure HDR UK is driven to deliver benefits to patients and the public.

    Find out more about our Public Advisory Board

  • We want to ensure that our work is driven to deliver benefits to patients and the public, whilst also being worthy of public trust and confidence. Active and meaningful patient and public involvement is vital.

    For that reason, we have joined a range of funders, regulators and research organisations in a shared commitment to patient and public involvement. Our aim is to ensure we improve the extent and quality of public involvement across the sector so that it is consistently excellent.

    More about our shared commitment to patient and public involvement

  • How have the patients and public been involved in our work, and what impact has it had?

    We work with patients and members of the public to learn from their needs and experiences. It’s important to share what we’ve learned from this time spent working together and to hear from those involved about what the experience was like for them. To do so, we’ve written up some case studies and opinion pieces that may be of interest to you.

    Our patient and public involvement impacts and outputs