Health data affects everyone. With a mix of backgrounds and experiences, an interest in health data and a drive to ensure the use of health data can deliver benefits to patients and the public, the group of 8 who make up the Public Advisory Board have had a key role in guiding our work.
They are often called upon for ongoing and ad-hoc requests such as with our annual reviews, writing blogs, giving talks, attending meetings and events, and linking with other areas of work on an individual basis. Since their inception, members have:
- Co-produced our Involvement and Engagement Guiding Principles.
- Inputted into the development of the HDR UK Strategy as well as the Communications Engagement and Involvement Strategy.
- Prioritised areas of work in which they believe the Public Advisory Board will have the most impact within our data access work, ensuring we address the areas that pose the biggest risk for public trust.
- Taken an active role in selection panels for our Technology Partner, Public Advisory Board members and research funding calls.
- Influenced and developed clear criteria for public engagement to be embedded in our Digital Innovation Hub Programme, alongside sitting on the selection panel.
- Supported and advised each of the Health Data Research Hubs as they developed their own patient and public involvement and engagement strategies.
- Shaped content on the Innovation Gateway to ensure it addresses key concerns the public may have whilst also describing the role and purpose of the Gateway in lay language.
- Shaped the direction of COVID-19 specific research and communication.
- Prioritised research questions, helped form the narrative and provided direct feedback on our COVID-19 reporting to SAGE (Scientific Advisory Group for Emergencies).
- Worked with us to develop ways of working around patient and public involvement and engagement.
To enable transparency of the work of the Public Advisory Board, they will be providing a brief overview of the meetings and discussions. We would also like to use these to start wider conversations with the public, researchers and all those involved or have an interest in health data so do keep an eye out for updates.
The April 2021 meeting was focused on discussing:
- Maximising the role of the Public Advisory Board and agreeing priorities for the Board over the next year
- The results from the data access committee processes survey carried out by members of the UK HDR Alliance and the next steps for this piece of work
This is only a snapshot and we will be developing case studies that showcase their impact soon – watch this space!