The diagram above outlines the HDR UK strategy, and how the different areas of our work – uniting health data, improving health data, and using health data – all come together to help us build one institute for health and care impact.

Patients and the public are vital in supporting us to achieve our mission, and we look to work with them across all areas of our work to ensure the public can have trust and confidence in the access to and use of health data for research and innovation.

Involvement of Public Contributors across HDR UK

  • The 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 10 who make up the Public Advisory Board have had a key role in guiding our work.

    Meet the Public Advisory Board members

    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 meet regularly, and you can read the summaries of each of our meeting discussions below.

    Read the overview from our last PAB meeting – March 2022

    Read the latest Public Advisory Board meeting blog post

    View summaries of all previous PAB meetings

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

  • The HDR UK Public Advisory Board has had a number of members since it’s inception in 2019, and each have vitally contributed to our work by supporting us to ensure the patient and public voice is reflected across the HDR UK community.

    Most recently, in January 2022, we said a fond farewell to five members of the Public Advisory Board, as they came to the end of their terms. Claire Cooper, Colin Wilkinson, Kush Kanodia, Margaret Rogers and Rachel Plachcinski had been part of the HDR UK Public Advisory Board for three years and have been instrumental in supporting HDR UK’s work.

    Their involvement in influencing and developing clear criteria for public involvement in the initial set up of the Health Data Research Hubs and providing feedback and guidance on their activities as they have progressed, has been crucial to ensure that PPIE is meaningfully embedded across the Hubs. The Board’s work in developing clear guidance for public involvement in data access across the UK Health Data Research Alliance and wider health organisations has also been vital in ensuring that patients and the public are involved at all stages in the health data research cycle. Finally, their support and guidance through the COVID-19 pandemic in helping the shape COVID-19 specific research and communications, has helped to ensure that HDR UK’s work is driven by the needs of patients and the public throughout.

    Past Public Advisory Board members and their achievements

    Margaret Grayson (January 2020 – January 2021)

    • Helped to hold HDR UK to account so that we work across the four nations and supported in embedding the patient and public voice in our regular report to SAGE.
    • Supported delivery of the Alliance Symposium in 2020 as a member of the Advisory Group.
    • Provided input to the HDR UK Strategy development to support HDR UK to focus our delivery plan on what makes us distinctive.

    Sarah Brooke (January 2019 – April 2021)

    • Involved from the start of the Digital Innovation Hubs – supported in setting the criteria for their development to ensure that PPIE is embedded in a meaningful way and the Milestone 2 assessment.
    • Provided guidance in the early stages of the HDR Innovation Gateway – gave advice on selecting a technology partner for its development to help the Gateway progress at pace and begin to become a vital tool for enabling discoveries to improve lives.
    • Supported the Board as Deputy Chair to Angela Coulter.

    Ben Johnson (January 2019 – April 2021)

    • PAB representative on development of the Scientific Strategy – supported HDR UK to focus on highlighting the impact for patients and the public.
    • Involved in the national science implementation projects, leading to significant improvements to our Patient and Public Involvement and Engagement approach.
    • Contributed to the Goldacre Review, helping to highlight the need for public involvement to build trust and confidence in data use.

    Claire Cooper (January 2019 – January 2022)

    • Involved from the start of the Digital Innovation Hubs – supported in setting the criteria for their development to ensure that PPIE is embedded in a meaningful way.
    • Provided guidance to HDR UK to help us focus on ensuring accessibility across all areas of our work.
    • Encouraged us to incorporate a wider range of voices across the HDR UK community.

    Colin Wilkinson (January 2019 – January 2022)

    • Supported HDR UK to ensure the patient and public perspective is shared
      through the regular report to SAGE, and provided input into reviewing the Health Data Research Hubs, including those recently established.
    • Worked with the wider Board to develop  a clear set of recommendations on public involvement in data access for Alliance members.
    • Involved in the development of the HDR UK Quinquennium, both in the development of content and with our communications team around
      how we visualise our strategy.

    Kush Kanodia (January 2019 – January 2022)

    • Helped HDR UK to shape our COVID-19 response, and ensured that we prioritised research questions that addressed health inequalities having recognised the varied impact that the pandemic has had on people
      across the UK.
    • Worked with the wider Board to develop  a clear set of recommendations on public involvement in data access for Alliance members.
    • Took part in the Diversity and Inclusion Committee and consistently pushed HDR UK to think about our approach to ensure we are considering the range of perspectives on health data so that the benefits will be felt by everyone.

    Margaret Rogers (January 2019 – January 2022)

    • Supported HDR UK to embed the patient and public voice in our regular report to SAGE.
    • Involved from the start of the Digital Innovation Hubs – supported in setting the criteria for their development to ensure that PPIE is embedded in a meaningful way, right through to the Milestone 3 assessment for the initial set of Hubs as well as reviewing newly set up Hubs in 2021.
    • Worked with the wider Board to develop  a clear set of recommendations on public involvement in data access for Alliance members.

    Rachel Plachcinski (January 2019 – January 2022)

    • Supported HDR UK to ensure the patient and public perspective is embedded in our regular report to SAGE.
    • Provided leadership in the working group to develop a clear set of recommendations on public involvement in data access processes for Alliance members, and produced a blog piece the experience of developing these.
    • Provided key insights and learnings to HDR UK from other sectors, including maternity care and international organisations.

  • 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

  • The Scientific and Infrastructure Delivery Group (SIDG)

    Our Science and Infrastructure Delivery Group’s role is to ensure all areas of the institute are delivering. This includes all aspects of the infrastructure strategy – the DIH programme, implementation projects and capital investments. The group’s role also includes ensuring that we are using health data by performing research that individual institutions cannot do themselves, encouraging early adoption, demonstrating impact at scale, and by training outstanding people. This group is chaired by Andrew Morris.

    The SIDG currently has three public contributors involved – Jillian Hastings Ward, Ben Johnson and Richard Ballerand.

    Find out more about the Science and Infrastructure Delivery Group