Patient and Public Involvement and Engagement is key to our work at HDR UK, as we can only achieve our mission if the public has trust and confidence in the safe and secure access and use of health data for research and innovation.
We are currently looking for 9 to 12 new members, including a Deputy Chair, to join the HDR UK Public Advisory Board and help provide patient and public perspective on health data research from across the UK.
The Public Advisory Board, who sit within HDR UK’s governance structure, provide strategic advice to the organisation, and work with us to encourage and enable effective health data science by involving patients and the public, demonstrate trustworthiness and build public confidence in HDR UK’s work, and grow public understanding of the safe and secure access to and use of health data in research.
Angela Coulter, Chair of the Health Data Research UK (HDR UK) Public Advisory Board, said:
“Membership of HDR UK’s Public Advisory Board offers unrivalled opportunities to get involved in shaping issues of national importance, such as how to involve the public in data governance, how assess privacy risks, and how to ensure that data science is always conducted in a trustworthy manner. We bring a wide variety of experience and backgrounds but are united in the belief that public involvement and scrutiny is key to ensuring research excellence.”
Since the Public Advisory Board was set up in 2018, they have been incredibly influential across our work, driving forward a range of activities including:
- Influencing and developing clear criteria for public involvement to be embedded in our Health Data Research Hubs, and providing feedback and guidance on their activities
- Shaping the direction of COVID-19 specific research and communications, and providing their valuable insights to our COVID-19 response
- Making recommendations to the Goldacre Review on the need for meaningful Patient and Public Involvement in the efficient and safe use of health data for research
- Developing guidance for public involvement in data access processes across the UK Health Data Research Alliance and wider health data organisations
David Seymour, Executive Director at the UK Health Data Research Alliance (the ‘Alliance’), said:
“Implementing the recommendations put together by the Public Advisory Board on public involvement in data access processes will be absolutely essential to building public trust is access to health data for research. Their work in this important area has highlighted good practices to build on to support Alliance members and wider health data organisations to overcome the challenges and obstacles to embedding public involvement in data access decisions as standard. In this way, the Public Advisory Board are having a tangible impact on our work across HDR UK, and I look forward to working with them further to continue improving involvement across the Alliance.”
Health data affects everyone, and we want to encourage everyone who has an interest in health data to get involved. You don’t need to be pro-access when it comes to health data to join the Public Advisory Board as we want the Board to be as representative as it can be, so we want to ensure there are a mix of thoughts and opinions.
Professor Andrew Morris, Director at Health Data Research UK (HDR UK), said:
“I am completely committed to Patient and Public Involvement and Engagement, and I am convinced that it improves the quality of research. Our Public Advisory Board are instrumental in keeping patients and the public at the heart of our work, feeding into our reporting to the Science Advisory Group for Emergencies (SAGE) and calling for more work on health inequalities, social care, long COVID and vaccine hesitancy. Members have made recommendations to the Goldacre Review on the need for meaningful patient and public involvement, ensuring racial and ethnic diversity of data for research and transparency on who is accessing data and why. The list goes on and on, but it is clear to me that we would not have made it as far as we have without our brilliant Public Advisory Board.”
Public Contributors: HDR UK Public Advisory Board
Applications close 19 December 2021
Health Data Research UK is looking for 9 to 12 new members, including a Deputy Chair, to join its Public Advisory Board to provide the patient and public perspective on the use of health data in...
Impact of Involvement across HDR UK
Our vision and strategy can only be achieved if the public has trust and confidence in the use of health data for research and innovation. To Support this, we involve public contributors across...