We're the UK's national institute for health data science. It's vital we learn about the needs and experiences of the UK's patients and the public, by involving them in how health data is collected, shared, and used for research. Their thoughts and opinions matter. Here, you can learn how to get involved or more about what we do.
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.
Patients and the public from diverse backgrounds are actively involved in HDR UK’s mission by shaping and influencing the work of HDR UK and associated research projects.
Making sure our work is clearly communicated to patients and the public and provides relevance. We encourage feedback so that we can enhance our work and be as transparent as possible.
HDR UK and our partners are using patient and public data for research. We need to make sure the work is worthy of public trust and confidence. Future advances in data research rely on public support, so ensuring openness, transparency and accessibility are essential.
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!
Are you interested in helping us shape our research? Perhaps you want to see what events we’re attending so you can meet us and discuss our work? Find out more about us and how to get involved at HDR UK.
There is a range of ways we can support researchers to engage the public. If you are looking to set up a PPIE group, we have some useful guidance. You may also wish to share work with our own groups. Take a look at what we can offer.
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.
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:
When we involve patients and members of the public we often provide payment for their support. Guidelines for these payments can be found here: HDR UK Honoraria and Expenses PPIE Policy.
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.
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.
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.
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?
