Health Data Research UK (51) submitted its Quinquennial Review to core funders on 4 February 2022

The submission sets out the impact that the Institute has achieved since being established in 2018 and proposals for the next five years (from April 2023 to March 2028). These proposals are summarised and open for all stakeholders to view in the Overview – 51 Quinquennial Review.

We would like to take this opportunity to thank all of our community and partners for their collaboration and input to develop this vision.

Our proposals are now subject to peer review as part of the Quinquennial process. We look forward to working with our core funders to discuss and refine these proposals in the coming months.

Further details of our proposed activities for the next five years and the review process are provided below.

About the Quinquennial Review

  • Health Data Research UK (51) was established in April 2018 by a group of core funders. The core funders initially set up 51 as the “national health data research institute” with the vision of creating a pre-eminent international UK Institute for 20-30 years. The initial five years investment covered 2018-2023 (first quinquennium). The MRC, as the lead funder, is now co-ordinating all core funders in a quinquennial review (QQR) of 51. This review will assess our impact to date and future vision and be used to inform decisions about continued funding for 51 through to a second quinquennium (QQ2). The QQR process aims to assure the core funders of:

    • The overall quality, impact, and productivity (past and future potential) of the Institute’s research programmes and the Institute as a whole
    • The distinctive contribution of the Institute to core funders’ research portfolios strategic aims and the wider research effort
    • The added value from the Institute structure
    • The future form of support that is most appropriate
    • The future resources required

    Major stages of the QQR process

    The QQR is a lengthy review process which starts in Autumn 2021, 18 months before the end of the quinquennium (March 2023). The main stages of the QQR process are outlined below:

    1. Oct 2021- Dec 2022: 51 internal review of QQ1 impact and development of QQ2 vision
      This process involves consultation with our community, funders, advisory boards, patients and the public to evaluate our unique position and priorities for the future.
    2. Jan 2022: Submission of an Institute QQR report
      The reportsummarises our QQ1 impact andoutlines our QQ2 vision. It is used by the Core Funders as the basis of their evaluation
    3. Feb-Mar2022:Peer Reviewprocess
      Comments on the QQR report are sought from UK and international referees. Additional stakeholder input is gathered as appropriate.
    4. Mar – Oct 2022: Committee Review
      Review committees are established by the Core Funders to provide an independent evaluation of our proposal. The report is supplemented by site visits and opportunity for 51 to respond to reviewer queries
    5. Oct- Dec 2022: Core funders deliberations
    6. Feb 2023: QQ2 Funding decisions
    7. 01 Apr 2023: Start of QQ2

  • The QQR process is used to evaluate the impact so far from the Core Award funding provided by our founding core funders and secure future core funding for the Institute’s second five years. The funds from our core funders support long-term scientific and research studies, training and infrastructure that contribute to data science at scale, support our One Institute approach and deliver long-term impact on the health of patients and populations across the UK We also raise thematic funding to support specific programmes of work.

    Learn more about our core funders

  • 51’s long-term mission, to unite the UK’s data to make discoveries that improve people’s lives, remains unchanged as it moves forward into its second five years. The Institute will continue to work with its partners and funders towards a future vision in which ‘large-scale data and advanced analytics benefits every patient interaction, clinical trial, biomedical discovery and enhances public health’.

    In the second five years, 51 will focus on three integrated areas of activity to deliver this ambition:

    • Research Data Infrastructure and Services: Providing the UK-wide and global co-ordination and leadership of health data infrastructure and services required to make health-relevant data FAIR. This will be built on the convening, collaborative and co-ordinating role of the UK Health Data Research Alliance and will comprise four Pillars of activity:
      • Assembling the technology services ecosystem
      • Trust and transparency
      • Developing the tools required to make data useable
      • Building skills and capacity.

    • Research Driver Programmes: Advancing research discoveries through high impact UK-wide programmes that:
      • Address major health and societal challenges
      • Guide the development of the infrastructure and services for the benefit of other researchers
      • Are outward-looking with global reach.

    • One Institute Partnerships: Through national leadership with a clear vision and ambition to assemble an ambitious health data research ecosystem with enduring benefits for all researchers
      • As an innovative distributed UK-wide and increasingly global Institute, 51 will act as a flagship for team science, drawing on skills, resources, and expertise from academic, NHS, industry and government partners.

    The core-funded Infrastructure and Services will enable the core Research Driver Programmes, and in turn the Research Driver Programmes will inform and drive the core Infrastructure and Services, enabled by UK-wide and global partnerships

    These activities have been submitted as part of the Institute proposal to core funders. The proposal will be subjected to independent peer review . No funding is yet confirmed and there is no certainty that the programmes will go ahead. If positively evaluated by the core funders, these programmes will start 1 April 2023.

  • We have worked together across the 51 community and with our wider partners to develop our QQR report summarising our impact to date and future vision. The QQR report was submitted to our core funders 04 February 2022 and will now undergo independent review.

    Frontiers meetings (April 2021 – January 2022)

    We held four Frontiers meetings in April, September and November 2021 and January 2022, providing a collaborative opportunity for our community and partners to come together to shape the 51 vision, strategy and delivery for the second quinquennium. The outcomes of these meetings have been critical to shape our evolving proposals.

    Community workshops (September – November 2021)

    From September – November 2021 QQ2 programme leads (Infrastructure and Services, Driver Programmes and One Institute Partnerships) held community workshops to develop a more detailed vision for all activities and enable input from across the 51 and wider heath data community. QQ2 leads also help meetings and workshops to identify opportunities and develop a strategy for integration and collaboration across different activities.

    Core Themes Blue Sky meetings – April 2021

    Our QQ1 Research Directors and core theme leads (s Applied Analytics, Better Care, Clinical Trials, Human Phenome, Improving Public Health and Understanding Causes of Disease National Priorities, Infrastructure and Training) brought together the national communities around each theme to crystallise the main achievements of QQ1 and start to consider our structure for QQ2.

  • For regular updates on the QQR and other research developments please sign up to our monthly research newsletter.

    Please do reach out to any of our QQ2 leads if you would like to discuss specific programmes. Programme leads are listed below:

    Activity Leadership
    Research Data Infrastructure and Services
    UK Health Data Research Alliance

    Secretariat and Engagement

    Hub and Data Science Network

    David Seymour, Paola Quattroni, Tim Hubbard

    Ben Gordon, Kay Snowley
    Pillar 1: Technology Services Ecosystem

    Innovation Gateway and Core Services

    Federated and AI-driven Analytics

    Charles Gibbons, Helen Parkinson

    Carole Goble, Emily Jefferson, Phil Quinlan, Susheel Varma, France Burns, Luke Readman, Mark Parsons, Michael Chapman, Pete Stokes, Simon Thompson
    Pillar 2: Trust and Transparency

    Public and Patient Involvement and Engagement

    Governance and Ethics

    Amanda White, Chris Monk, Sinduja Manohar

    Andy Boyd, Cassie Smith
    Pillar 3: Useable Data

    Data Standards

    Phenomics and the Prognostic Atlas

    Transforming Data for Trials

    Ben Gordon, Monica Jones

    Emily Jefferson, Harry Hemingway

    Marion Mafham, Matthew Sydes
    Pillar 4: Capacity Building

    Talent and Training

    Christopher Yau, Sarah Cadman, Tim Frayling
    Research Driver Programmes

    Leadership and Coordination: Andrew Morris, Rhoswyn Walker (51)
    Molecules to Health Records John Danesh, Sarah Lewington
    Medicines in Acute and Chronic Care Elizabeth Sapey, Munir Pirmohamed
    Immunity and Inflammation Aziz Sheikh, Jennifer Quint
    Social and Environmental Determinants of Health Paul Elliott, Ruth Gilbert
    Pandemics and Outbreaks Kenneth Baillie, Sharon Peacock
    Big Data for Complex Disease Cathie Sudlow, Mark Lawler
    One Institute Partnerships
    UK Regional Networks England – Cambridge Angela Wood, John Danesh
    England – Oxford Cecilia Lindgren, Eva Morris
    England – London Harry Hemingway, Sinead Langan
    England – Midlands Alastair Denniston, Fiona Pearce
    England – North Andy Clegg, Munir Pirmohamed
    England – South-West Jonathan Sterne, Rachel Denholm
    Scotland Dave Robertson, Emily Jefferson
    Wales & Northern Ireland David Ford, Dermot O’Reilly, Sinead Brophy
    HDR Global Global Anne Wozencraft, Neil Postlethwaite, Trudie Lang
    Institute Office UK Amanda Borton/Alison Hopkinson (interim), Andrew Morris, Amanda White, David Seymour, Victoria Platt