Our Public Advisory Board
Our Public Advisory Board has been in place since January 2019. The board make sure HDR UK is driven to deliver benefits to patients and the public.
HDR UK can only achieve its 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. The Public Advisory Board sits within HDR UK’s governance structure to provide strategic advice to HDR UK bring the voice of the public into our work. The board has a particular focus on how we can work together to:
- Encourage and support effective health data science by involving patients and the public.
- Build public understanding of the safe and secure access to, and use of, health data in research.
- Demonstrate trustworthiness and build public confidence in HDR UK’s work, including access to, and use of, health data in research.
- Ensure people feel confident in contributing their data for research and data linkage purposes.
Quote from new PAB chair
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Meet the Team
Terms of Reference
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Blogs and opinion pieces
Opinion
How well is information on data access processes shared with the public? Introducing standards to inform good practice
Alan Holcroft is a member of the Public Advisory Board, interested in how organisations build the public’s trust and confidence in providing access and consent for their data to be used in...
Opinion
Being part of the Public Advisory Board has been such a unique experience
Many of you are probably reading this because you are interested in joining the Public Advisory Board. To which I say, express your interest today!
Opinion
March Public Advisory Board meeting – planning ahead, and reflections on three months as a new member
The focus of the March Public Advisory Board (PAB) meeting was on the Board looking ahead and planning their strategy and activities for 2022-23 and beyond. Read this blog post by PAB member Alan...
Opinion
February Public Advisory Board meeting – Trusted Research Environments
The focus of the February Public Advisory Board (PAB) meeting was the activity the PAB aim to do around improving public involvement in Trusted Research Environments (TREs). Read this blog post by...
Opinion
Why Public and Patient Engagement and Involvement is so important to health data research – Jillian, Rosanna and Chris, HDR UK lay members
Patient and public involvement and engagement (PPIE) is vital in the development of different areas of our work, including those where there is a level of uncertainty. Involving patients and...
Opinion
Submission from HDR UK Public Advisory Board to the Goldacre Review
On 9 February, the government announced a rapid review to focus on the more efficient and safe use of health data for research and analysis for the benefit of patients and the healthcare sector...
Opinion
Reflections on the COVID-19 National Core Study Data and Connectivity Delivery Group
What began as something so undesirable as a worldwide pandemic has become a catalyst for a coordinated, UK-wide approach to COVID-19 research, the National Core Studies Programme. It had become...
Opinion
Public views on data access for Research and Development
How does the public view use of personal health and care data for research and what controls need to be in place to protect privacy and establish trustworthiness? These questions have been a...
Opinion
Reflections on the latest Public Advisory Board meeting
Guest Blog: Sarah Brooke, Deputy Chair of Public Advisory Board
Case study
How a Public Advisory Board is guiding HDR UK’s work
Ben Johnson is a member of HDR UK's Public Advisory Board. He explains how the board was set up and talks about its role.
