Involvement of Public Contributors across HDR UK

  • The UK Health Data Research Alliance (‘Alliance’)

    The Alliance is an independent consortium of leading healthcare and research organisations united to establish best practice for the ethical use of UK health data for research at scale. Patients and the public are involved across the different organisations in the Alliance, and you can learn more about this by viewing the summary document below.

    PPIE across the UK Health Data Research Alliance 

    Data and Connectivity National  Core Study

    Data and Connectivity –led by Health Data Research UK (HDR UK) in partnership with Office for National Statistics (ONS)– connects UK health data to support and accelerate research on COVID-19, enabling streamlined data access and analysis for COVID-19.

    There are currently two Lay Members who sit on the Data and Connectivity Delivery Group and a wider Advisory Group of three lay members works alongside the Delivery Group. The objectives of the lay members on the Delivery Group and the Advisory Group are to raise any concerns and help shape the development and delivery of the programme. 

    Click here to find out more about PPIE in Data and Connectivity 

    DARE UK

    The UK trusted and connected Data and Analytics Research Environments programme (DARE UK) aims to design and deliver a national data research infrastructure that is joined-up, demonstrates trustworthiness and supports research at scale for public good.

    DARE UK is in the early stages of development, and during this first phase of the programme they will be running a series of public involvement workshops to get to the depth of public views regarding what a trusted and connected national data research infrastructure should look like.

    They currently have two Public Contributors on their Programme Board, and two Public Contributors on their Scientific and Technical Advisory Group.

    Click here to find out more about PPIE in DARE UK

    The Health Data Research Innovation Gateway (‘Gateway’) and Infrastructure Advisory Group (IAG)

    The Gateway provides a common entry point to discover and request access to health information (health data) held within UK health datasets. The Gateway does not hold or store any health data. It allows researchers to see descriptions (metadata) of health datasets available in the UK so that they can request access to them for research.

    Patients and the public are continually involved in development of the Gateway, through helping to develop resources and tools, and ensuring that information on the website is accessible to patients and the public.

    We also have the The infrastructure advisory group (IAG), which provides strategic advice to Health Data Research UK and the UK Health Data Research Alliance to guide the development of the Gateway. There is currently one public contributor as part of their group.

    Click here to find out more about PPIE on the Gateway

  • The Health Data Research Hubs

    Our Health Data Research Hubs are centres of excellence with expertise, tools, knowledge and ways of working to maximise the insights and innovations developed from health data. Our Hubs work across areas including improving cancer care, eye health and respiratory conditions, and each of them involves public contributors across their work.

    Find out more about the Hubs and their work

    BHF Data Science Centre

    The BHF Data Science Centre (BHF DSC) is a partnership between Health Data Research UK and the British Heart Foundation (BHF) and sits within HDR UK. The partnership works to deliver the data and data science needed to address some of the most important challenges in heart and circulatory disease research. We seek to ensure the public and patient voice is embedded in our work, with the shared aim of improving the quality of research for maximum benefit.

  • Better Care

    Our Better Care programme aims to improve people’s lives by equipping clinicians and patients in the UK with the best possible data-based information to make decisions about their care. Our vision is that by 2030, patients across the UK will benefit from healthcare decisions informed by large scale data and advanced analytics to identify what will work best for them.

    Public Contributors are involved across Better care as part of the Steering Group, as well as Better Care groups for different regions of the UK.

    Find out more about the Better Care programme

  • HDR UK Public Advisory Board

    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 a range of public contributors across our community and for 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).
    • Developed guidance for public involvement in data access processes across the UK Health Data Research Alliance.

    The Public Advisory Board meeting regularly, and you can read a brief overview of the meetings and discussions here.

    Read the overview from our last PAB meeting

    Meet the Public Advisory Board members

    To view the Public Advisory Board Terms of Reference, please click here.

    The Scientific and Infrastructure Delivery Group