Over the past few months the importance of working with patients and the public to inform our work at HDR UK has been a consistent theme at meetings and events that I’ve attended. Colleagues recognise that we need to embed public engagement in everything we do at HDR UK; after all, we’re using patient data for research.
Now, in the first two weeks of the new year, we’ve made a huge step forward in turning this talking into action by setting up a Public Advisory Board for HDR UK – one element of our public engagement strategy.
The HDR UK Public Advisory Board will provide advice on the delivery of our vision, principles and future strategy, with emphasis on ensuring that health data is used responsibly for research and innovation. It’s nine members (who will be announced soon after the Board’s inaugural meeting later this week) bring diverse experience, understanding and skills to HDR UK.
We had a huge response to the advert for Board members in December, with 99 people applying for a place (a big, but pleasant surprise to everyone involved!). Of these, 35 candidates were shortlisted to attend exploratory meetings so that they could decide whether HDR UK would be a good fit for them and so we could see how they would work together and participate in group discussions. We then had the very difficult decision to select the final nine, outstanding applicants. We also hope to have an ongoing relationship with other people who applied as we consider forming a wider network of public and patient advisors for HDR UK.
It’s early days, but there are many parts of this process that have been an inspiration to me and my colleagues:
- We’ve had a huge amount of advice and support from people working across HDR UK and in other organisations who have given up their time to help us establish the Board. It’s been amazing to see how strong and helpful the public engagement and involvement community – we would like to thank everyone who shared the advert across their networks as this helped us reach so many people. In particular our thanks go to Philippa at Understanding Patient Data; Chris and Alison at Use My Data; Jillian at the Genomics England Participant Panel; Heather at the British Heart Foundation; Matt and Sadie at Cancer Research UK; and Simon at NIHR to mention just a few.
- The level of interest in our Public Advisory Board tells us that people really care about how their data is used and that they are willing to give up their valuable time and expertise. Everyone’s contribution and interest so far will inform our public engagement approach as it develops and we thank all 99 applicants.
- The insights we’ve gained in the early conversations with the applicants of the Public Advisory Board have been immediately useful and have encouraged us to bring patients and the public into our earliest design thinking.
- We’ve had very encouraging conversations with patients, carers and others about why their own personal health data should (some say must) be used to benefit future generations. In return, people need reassurance that data will be used responsibly at all times.
The Public Advisory Board will meet for the first time later this week and our members are keen to help us shape how health data is used to transform health and care. We’re also running an event on 22 January to hear views from patients, members of the public and people working in charities on the Digital Innovation Hub Programme and I’m sure we’ll hear some really valuable thoughts and feedback. The main event is sold out with 85 registrations and so we’ll be running it as a webinar for those wanting to join remotely.
For me this has been one of the most fulfilling starts to a new year and I’m excited about the opportunities that our Public Advisory Board and our wider public engagement strategy will offer for the future of health data research.
Please watch this space as our journey continues!
Note: Thanks also go to Fiona McKenzie who is working with us on an interim basis to establish the HDR UK Public Advisory Board. Fiona brings an incredible amount of experience and insight and we have all benefited from her professional and personal support over the past few months.
Antony: Making my voice heard to support the millions of people living with chronic pain
22 November 2023
Why do I do this? Some of it's about the pain and raising pain awareness, but it’s also about making a difference. The key is to keep asking questions, be curious, and be kind.