Our Public Advisory Board is made up of public members from across they UK. They review and provide their thoughts on many aspects of the work we do. Their overall goal is to guide us and ensure our work benefits patients and the public.
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.
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 take pride in how we work to involve and engage patients and the public in health data research. We do this in a number of ways by:
- Taking on and implementing feedback from our Public Advisory Board
- Working with members of the public in workshops to develop and improve our work
- Releasing opinion surveys to gain wider public feedback
- Setting up events to reach members of the public that we haven’t before
Find out more
We believe that PPIE is central to establishing trust and confidence in health data research. Therefore, we have set up some guiding principles to support our members to work towards achieving the UK Standards for Public Involvement.
Throughout our work, we will use our guiding principles to ensure best practice in PPIE.
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.
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.
HDR UK Voices
HDR UK Voices is a growing network of people who want to use their voice to help shape and influence our work. Want to use your thoughts and ideas to shape health data research?