Company Rgistratth number.. 10887014 (Enall& and Walesl Charity number: 1194431 HEALTH DATA RESEARCH UK (a company limited by guarantee) ANNUAL REPORT AND FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2024 "JDHL6KP 09112r2024 c1PANIEs HOUSE AI6
i&$
HEALTH DATA RESEARCH UK LEGAL ANO ADMINISTRATIVE INFORMATION FOR THE YEAR ENDED 31 MARCH 2024 CONTENTS Pagès Leeal and Adminlstraii¥e Infomiation Trustees. Report Independent Auditorfs Aeport 25 Statement ol Finan¢ial Actl¥ities 28 Balance Sheei 29 Statement of Cash flows 30 Notes to the Finanttal StatÈmÈnts 31
HEALTh DATA RESEARCH UK LEGAL AND ADMINISTRATIVE INFORMATION FOR THE YEAR ENDED 31 MARCH 2024 Trustees and Oiiettors Dr Graham Spittle. C8E. Chair- retld 26.07.2023 Dame Julie M¢)ore, Chair-app)inied 26.07.2023 Patsy Wilkin50n. Deputy Chair-appointed OS.10.2023 Professor Sir eX Markham, retired as trustee 08.11.2023 ProfessorSwJames Srnith retsred astrustee 08.11.2023 ProfEssor Darne Janet T)rnton retired as trv#ee 08.11.2023. reappointed 21.03_2024 Professor Sarah Harper C8E. retired a5 trustee 20.06.2024 Lord JarneslyShahnessY Wiliam Boa Alison Wikox Dr kndrew Ekter Professor The lord Ara Datti- rewBned 22_03.2024 Dr Oaire Bithell Mark Walptyt-re>gThed OS.06.2024 DT Claire Neand Drjunaid 6aiwa-appotnted 01.04.2024 Dr Prabhu Arumu8am •appointed l July 2024 Profe$50r julia PJi50n Noble. C8E- appointed l SeptembEr 2024 P¢ofessor Nilesh Samani- appointed I September 2024 Sir Dav¥1 Sknnn-apwxnted I September2024 Company fegi51ered number 10887014 Rettered offKe Wellcome YNst Gibbs Buildir 215 Eu5ton Road London NW128E Prlnupal operadn8 1)ffi 215 Eusion Road London NWI 28E Auditor Hav51fbattyre LLP 10 Queen Street Place London EC4R IAG Company sttrt*ry Eltment31 camNY kneiary knmited Bankers Narwest 250 8ishops8ate London EC2M 4 Soliotors "rd & Bird LLP 12 New Fttter Lane London EC4A IIP
HEALTH DATA RESEARCH UK HDRUK TRUSTEES, REPORT FOR THE YEAR ENDED 31 MARCH 2024 Foreword The Trustees are pleased to present their Strategic report for Health Data Research UK I-HDR UK-, the "Company", the "Institute") for the year ended 31 March 2024. This report provides a review of the actNities and business for Health Data Research UK and outlines its development and performance for the financial year. the financial position at the end of the year and an ouiline of its plans. The report also describes how the risks facing Health Daia Research UK are managed. Overview Health Data Research UK'S S-year strategy, a5 set-out in the Quinquennial Review IQQRI. wa5 fully endorsed bv International peer-review arhd the Institvte's core funders in 2022. While providing the framework of a SiBnificant proportion of Health Data Research UK'S research. infrastrurture and partnership programmes. it is vital that the Institute responds to changes in the landscape and rnaintain5 a focus on delivering outcomes and impacts that only a national Insiitute can deliver. Following the successful QQR. our core funders- nine of the largest government and charity research funders in the UK - awarded us £71.3 million for the years 2023 to 2028. This increase in funding places the institute in prime position to build on its success. The achievement5 highlighted in the report below. are a result of the commitment and dedication of the many teams across Health Data Research UK'S distributed national Instrtute. our partners and our patient and public advisors. It is a testameni to their focus on our Values of transparency, optimism. respect, courage and humility that we have made such progress. As we irnplement our refreshed strategy. we look forward to working with our partners and community, strengthening our connections and to focus on deliverin8 novel insights and innovatNe data research and services to enable discoveries that improve people's lives.
HEALTH DATA RESEARCH UK TRUSTEES. REPORT FOR THE YEAR ENDED 31 MARCH 2024 Strategic Report Business and •¢tivity review The UK is in a unique position thank5 to the NHS and its cradle-tO-8rave records for 65 million people. Safe and secure use of this data could improve treatments. deliver better health and care and save live5. however. it can take years to find, access and 'wrangle' data from different plaos into a state that researchers can use for analysis. Health Oata Research UK is the national instilute for health data that includes England. Scotland, Wales and Northern Ireland with a rnission to accelerate trustworthy data use to enable discoverie5 that improve people's lives. Our 20-year vision is for large-scale data to benefit every interaction with patients. every clinical trial and every biomedical discovery. and to transform publit health. We work in partnership with the NHS. industry. charities and universities to realise the potential of the UK'S wealth of health data in life-changing research. Patients and the public a actively involved in shaping Health Data Research UK'S work and ensuring it deliver5 public benefit. We are a multi-dis¢iplinary, geographically distributed, UK-wide Institute of over Is researchers across more than 39 organisations. During the year. the Institute has engaged a broader UK and intreasingly global commvnitv spanning the National Health Service INHSI. research institutes. industry. charities. government and regulators with more than 500 organisations collaboraiing on programmes of health dala research initiated and enabled bv the Institute. Health Data Research UK'S strategy was significantty updated as part of the Institute's 5-year funding renewal and the period from April 2023 through to March 2024 has seen Health Data Research UK delNering against its three strategic goal5= l. A¢celeraiin£ trustworthy data use by implementing a national research data strategy and assembling infrastructure and service5 aligned to research and innovation needs. 2. Empowering researchers by valuing people with diverse perspectives and Skills, committed to open and team science to advance scientbfic discoveries and deliver pattent and public benefit. 3. Promotin8 partnerships by building and maintaining critical partnerships. aligning incentives and reducing complexity across a fragmented landscape to streamline health dota science. Achievements and Performance As an integral part of our strategy, five research driver programmes were kickstarted in late 2023 with the aim io test and improve trustworthy health data infrastruciure forthe wider benefit of the research community. Each programme has a focus on an area where data sctence has great potential to improve public health, prevent people from becomin8 unwell, and enhance patient care-. Bi8 Data lor Complex Disease is harnessing whole population. national linked health data to improve the under5tandin& prevention and early diagnosis of cancer, cardiovascular conditions and other complex diseases. Inflammation and Immunity is seeking to better understand the epidemiology of allergic and respiratory conditions across the UK and identify opportunities to reduce inequalities in care. Molecules to Health Records is bringing together information on genomics. other molecular trait5, and. electronic health records at scale. Medicines in Acute and Chronic Care aimsto understand and transform the use of medicines for patients of all aEes. especially those with complex care needs caused by multiple long-term condition5.
HEALTH DATA RESEARCH UK TRUSTEES. REPORT FOR THE YEAR ENDED 31 MARCH 2024 Social and Environmental Oeterminants of Health bs focussing on developing national infrastructure and methods to connect different types of Social and environmental data with health data to gain new insights about the wider (Jeterminènts of health. The area of Brain Health has quickly ev0ed into a strategic empha515 for Health Data Research UK.. In lune 2023 A new UK-wide researth platform was anrbounced. The UK-T81 REp05itory and data PORTal Enabling discoveRy ITBI-REPORTERI - to be led by the University of Cambridge in collaboration with Health Data Research UK will boost the use of data to advance treatment and care for people wtth traumatic brain injury. The platform h35 received £9.$ million in funding from the Medical Research Council IMRCI. the National Institute for Health and Care Research INIHRI. the Ministry of Defence and Alzheimerfs Research UK. In the same month Health Data Research UK launched the NEURii collaboration which aims to translate healthcare data and digital sciences into project5 that can enhance the quality of life of people living With dementia and contribute to a national data infrastructure in the UK. The two-year pilot will use high-quality. real- world data alongside artificial intelligence IAII and machine learning IMLI to deliver projects that have the potential to make a meaningful difference to patient5. lives while maintaining data securrty and public trust. The early part of 2024 saw significant progress with two partnership discussions bearing fruit. In February Health Data Research UK and the UK Dementia Research Institute (UK DRI) were invitetl by the Medical Research Council IMRCI to develop a £20 million fundin8 proposal to create a Dementia Tria15 Acceleratorwhich complement5 the work of the eovernment's Dementia Mission. In August 2023, a UK Research and Innovation IUKRII report hi8hlighted the need for action to reach the target of net-zero digital research infra5tructure5 by 2040. Dr Loic Lannelongue. Research Associate. University of Cambridge and Prof Michael Inouye. University of Cambridge and Baker Heart and Oiabetes Research Institute, developed an online calculator to help scientists easity estimate the carbon footprint of a computation. Thev then developed GAHPC. a version of the calculator tailored to high-perfom)ance computing IHPCI infrastructures. These open-source and open-actess tools have had approximately 200 users per week and to Ilate has had 24,1KJO over811 Users from around the world. making it easier for thern to track their energy usage and implement broader reporting of carbon footprints. In October 2023 a new iniliative launched by Health Data Research UK (HDR UKI and funded by the Medical Research Council IMRCI enabled Nineteen projects. each with the aim of improving the clarity and accessibility of information about data access processes for the public and researchers. The Transparency Standards are designed to support data custodrans in improving thè clarity and accessibility of information about data access processes for the public and researchers. On 22 May 2024 we hosted a special in-person event in London to celebrate the project outputs. The UK Health Data Research Alliance marked five remarkable years of progress and commitment to maximising the benefits of health data research for all. Over the past 5 years the alliance has Brown arbd diver5rfied its membership.. from nine founding members to a network of over 10) organi5ation5 today, and expansion beyond data custodian5. It has accelerated access to health data for vital research during the COVID-19 pandemic with Alliance member5 having developed a unified approach to data discovery and access. aligning processes acfOS5 the four nations. And critically, it has improved transparency in the use of health data for research by pioneered a data use register standard to 5UPPOrt consistent and accessible public records of data usage. Te3ms have made significant progres5 acr055 the rapid data-driven project5 to identify and tackle winter pressures in the health Ca system. Led by Professor Liz Sapey. Direclor of the Institute of Inflammation and A8eing at the Unbversity of Birmingham. researchers have developed a prediction tool to improve the flow of patients through Same Day Emergency Care ISDECI- a way of treating emergency patients who would otherwise be admitted to hospital. The project highlighted that previously used tools, developed in specific population5, are less effective in a diverse urban centre. The team is now working with trusts to look at the workforce implications of using their new tool and aim to publish their findings in the fvIu.
HEALTH DATA RESEARCH UK TRUSTEES. REPORT FOR THE YEAR ENDED 31 MARCH 2024 Health Data Research UK enabled whole population-based research in England during the pandemic. A Trusted Research Environment ITREI for England was created early in the pandemic with health data covering >54 million people, thanks to a collaboration between NHS England and Health Data Research UK. This allowed the first research study of health records for 67 million people in all four UK natKJns- published in the Lancet in January 2024. It looked at gaps in Covid-19 vaccine coverage and found that between a third and a half of the population5 of the four UK nations had not had the reeomrnended number of vaccinations and boosters by summer 2022. The approach coultd be extended to many other areas of medicine with great potential for new discoveries in the understanding and treatment of disease. This study marked a significant milestone in Health Data Research VK'5 mission to unite the UK's health data to enable discoveries that irnprove people's lives arbd demonstrates the value and potential ol wpulation-wide health data studies. BHF DSC Launched in January 2020 as a partnership between Health Data Research UK and the British Heart Foundation, the BHF Data Science Centre IBHF DSC) enables responsible, ethical research that combines the power of advanced anatytic methods wTrth the UK'S large-scale and diverse tardiovascular data. The DSC continue5 to develop strategic partnerships and following on from the launch in September 2023 of the Stroke Data Science CataSt - a strategic partnership with the Siroke Association and the BHF- the centre ha5 established a partnership with Kidney Research UK and the BHF to launch the Kidney Data Science Calalyst. The Public Advisory Group IPAGI ha5 grown from 17 to 26 public contributors. Throughout the year. their invaluable contributions have had a significant impact on varTrous aspects of the centres work. including participation on funding panels to select searCh projects forfunding. The PAG convenes quarterty and has been instrumental in ensuring thal work remains patient-centric and relevant to the public. Key achievement5 made this year include: Through the CVD-COVID-U COVID-IMPACT consortium the DSC supported the largest ever study to be conducted in the UK on 67 million people across all four nations. The study. published in The Lancet looked at the risk associated with COVID-19 under-vaccination and showed under-vaccination was linked with an increased risk of COVID-related hospitalisations or deaths. The health data science team have been developing curation and analysis too15 and resources to support researchers conducrin8 research using whole population data in national secure data environments. These resources are crucial to speed up research and ensure it is of hiEh quality. Published a re ort on prioritising the types of data that should be collected from wearables and shared for research- taking into account public and researcher views. One of the public contributors involved in Ihi$ Study featured in local rnedia Maidenhead Advertiser and BBC Berkshirel. explaining why she got involved. The DSC Submitted a fvnding application to Smart Data Research UK to develop J range of tools and seNices for the research community to enable research using data from smartphones. wearables and medical (Jevices in a safe and secure way. Working with Swansea University SeRP and SAIL Databank to grow the number of disease-based cohorts that Use the clinical research cohorts trusted research environment ITREI to link individual with other types of health data in a safe and secure environment, to better understand the causes and consequence5 of disease. Procee$ have been established to streamline and support researchers with onboarding data. Worked with the research community to identify requirements enabling the curation of phenotyping algorithms for the cardiometabolic community and ensuring they are FAIR (Findable. Accessible. Interoper3ble antl Reusable). Published recommendations and a news iece highlighting how these recommendations support reproducible and efficient Search. Theteam is now ensuring all phenotyping
HEALTH OATA RESEARCH UK TRUSTEES, REPORT FOR THE YEAR ENDED 31 MARCH 2024 3lgorithms created or used as part of ihe CVD-COVID-UKICOVIO-IMPACT consortium are available in the HDR UK Pheno e Libra The DARE UK {Data and Analytics Research Environments UK) programme The DARE UK programme is funded by UKRI as part of its Di ital Research Infrastrurture portfolio of investments, which supports the development of a coordinated vision for digital research infrastructure in the UK. DARE UK is a parb-UKRI. cross-domain programme its scope covers all tYrS of sensitive data. including data abDUt education, health. the environment and much more. There is growin8 consensus (including from Phase l DARE K recommendations ihe Goldacre Review the UK Health Data Research Alliance TRE Green er and the DHSC Data Saves Lives policy paperl that all sen51tive data should only be acce55ed and analysed by researchers within a Trusted Research Environment ITREI. Central to the DARE UK Pfogramme's ambition is to enable and support the development of a national interoperable network of secure digit31 Search infrastructures or TRES, laying the foundation for an ecosystem of nexi-8eneration TRE5 for advanced data research for the public 800d. Delivery of Phase l of the programme began in July 2021 and has been deliVed with joint oversight from Health Data Research UK and ADR UK. Phase I was an extensive programme of community engagement that formed the found3tion for developing a clear vision of the needs of different research communitie5. and to address the interest5 and concern5 of the public around the use of sensitive data for research. Phase I has included.. An initial landsca vi w and a more recent infrastructure landsc e review to rnform undersianding of the digital and Structural foundations that underpin sensitive data research across the UK.. Two portfoli05 of funded projects, the DARE UK S rint Exem lar Pro ects and DARE UK Driver Pro ects that have tested and developed earfy thinkbng and proof of concepts bn key aa$ of the programmes vision.. A Phase I recommendations report settin8 Out several findings and recommendations of the programme from Phase I with the aim of establishing the key challenges across the data research landscape, and firsts steps on how to overcome them to better support data research at Sca for the benefit of society.. A Public Dialo ue to explore public views regarding what a more joined-up. efficient and trustworthy national data research infrastructure should look like- The DARE UK Communit Grou s initiative linclvding funding) aimed at encouraging different communrties within the UK 5en5itive data research landscape to co-create components and pieces of work that align with the programrne'5 vision- The ongoing development of a draft federated architecture blueprint to examine the prerequi51tes and tools required to create a secu, connected, and interoperable network of TRES lor sensitive data research across the UK (the next version of the Llraft is in progress,. The ongoing development of inter-di5ciplinary. cross-domain scientific use cases linking different types of sensitive data together at scale to enable research that benefits the public Ireport to be published after the pre-election periodl.
HEALTH DATA RESEARCH UK TRUSTEES. REPORT FOR THE YEAR ENDEO 31 MARCH 2024 Communications and engagement The Health Data Research UK Communications and Policy Team has built upon the successes of the previou5 year and delivered on increasing Health Data Research UK'S reach through workinE Wlth the media, strategic communications campaigns. event5 and communicating impact on Health Data Research UK digital channels. Health Oata Research UK's digital channels continue to go from strength to strength. Between l April 2023 and 31 March 2024 was visited 284,998 times by 187,266 users. The Health Data Research UK webslte links to the Alliance website. the Health Data Research UK Future5 training platform and the Gateway to provide users with a clear route to discover more detailed, tailored infomiation in response to their user need. We have seen a significant increase in our social media succes5 measures across the 2023124 financial year. We have seen a 34% increase in followers across our social media channels compared to the previou5 financial year. Our Linkedln followers have increased by 5,969 and our Twttterlx followers have increased by 1,380. At the end of the financial year our follower count was 13.050 on Twitter X and our follower count was 15.847 ort Linkedln. Our monthly institute email newsletter, HIVE, continues to provide a concise update on key artivities and developments across the organisation to over 6.700 people, an increase of 335 Subscribers. The 8lack Internship Programme was one of the major projects supported by the communications team this year. Health Data Research UK successfully attracted many talented Black data scientists to apply for the programme and partnered with community TV stations and healthcare podcasts to enable the interns to share their story globally, further promoting the programme. Health Data Research UK'S annual conference on 5-6 March 2024, trtled 'The Grand Challenges in Health Data,, discussed the global challenges in health data research. featuring talks from internationally leading figures across the health data and technology research sector. The two-day event included interactive panel discu55ions, keynote sessions, an exhibitor area, as well as networking opportunities throughout the day. The 2024 conference wa5 a two-day hybrid event held in Leeds at the Royal Armourles Museum. It was highly successful, with over 7 attendees present in person over the two days. and an additional 570 attendee5 participating online.
HEALTH DATA RESEARCH UK TRUSTEES. REPORT FOR THE YEAR ENDED 31 MARCH 2024 Patient and Public Involvement and Engagement Health Data Research UK has demonstrated leadership in promoting transparency and trustworthiness to the public by embedding Patient and Public Invofvement and Engagemenl IPPIEI activities in governance, infrastructure developments, and research. A prime example of this 15 the contribution of Health Data Research UK'S Public Advisory Board IPABI to the development of Tran5 arenc Standards. These standard5, informed by the PAB'S mission to ensure clear communication of data access rocedures with members of the ublic have been Crucial in guidirbg Health Data Research UK'S approach. From ihe im lementaiion of these standards to the celebration of im act PAB members made the drfference and rneaningfully contributed to the strategic thinking and work of Health Data Research UK. However, throughout the year, Health Data Research UK has hugely benefitted from the significant contributions of many more public mernbers invofved in PPIE activities across the Institute. These include HDR UK Voic British Heart Foundation's Data Science Centres IBHF DSC) Public Advi50ry Group, and OARE UK'S Programme Board and Public Advisory Group. CollectNely. th.ese groups have made a significant impact. ensuring Health Data Research UK'S activities are drNen by the goal of delivering benefits to patients and the public. The range of PPIE attivities they have been invofved in over the 202312024 year include.. Played an integral role in the HDR UK Stories cam engagement in health (Jata.. n sharing personal experiences to inspire involvement and Took an active role in the planning and executin8 of events such as the Humber Science Festival and the Northern Ireland Festival fostering community interaction and awareness. Provided valuable insights to shape the HDR UK 2024-2028 Draft PPIE Strate through collaborative efforts with internal and external stakeholders, ensuring inclusivity an(1 accessibilrty in public consultaiion processes. Contributed significantly to advancing the mission of the Public En ement in Data Research Initiative IPEDRII by helping with the planning. analysis, and re ort for the survey consultation on the Draft Best Practice Standard for Public Involvement and En ement. Provided constructive feedback on the PEDRI business plan for its second phase, shaping its direction and influencing the creation of pled8es to foster unified commitment to public involvement and engagement among all participating partners. Played an integral role in the plannin8 of the Alliance-PEDRI event aimed at explorirb8 Potential barrier5 and facilitators to the adoption of the draft standards earlier mentioned. Demonstrated dedication to Health Data Research UK'S commiiment to the Shad Commitment to Public Invofvement initiative by active participation in related working groups and dissemination of k milestone5. Actively engaged in the PPIE award initiative by contritwjting to the selection process. evaluating submissions. and rovi(lin valuable ins hts. Co-designed a Diabetes Data Science Cata st and CVD-COVID-U IMPACT A roval and Over51 ht Board tase study highlighting the importance of public involvement in call for funding and research application panel5. Co-developed public communication outputs sharing the findings from the Centres work across Im mart hones and Wearable ensuring that the outputs were accessible and understandable. In Co-developed a Short film showcasing the Importan of public invofvement within healih data research and across the BHF Data Science Centres work,. io
HEALTH DATA RESEARCH UK TRUSTEES, REPORT FOR THE YEAR ENDED 31 MARCH 2024 Co-desi8ned a new atient and ublic involvement website section on the BHF Data Science Centres new website launched in August 2023 Co-authored publications about Smart hone5 and Wearables Data in Cardiovascular Research. Reviewed and provided approval for applications within our VID IMPACT Consortium Co-presented at BHF DSC Monthly webinars with a focus on plain English and its importance from a public perspective. Reviewed the DARE UK pyogramme proposal and delivery strategy to ensure strong focus on Public Involvement and Engagement IPIEI and alignment with public benefit objettNes. Attended quarterly meetings to deliberate on specrfic DARE UK PIE plans. activities. and challenges. offering guidance as needed. Collaboraled as 'Lay Leads, within DARE UK-funded projects delivery teams to facilitate and oversee the integration of PIE aspects into project delivery. Provided guidance for the evaluation of the PIE activrties and outcomes within the DARE UK S Pro ects and Oriver Pro rint Exem lar Informed the design of a public-friendly information pack explaining DARE UK'S federated architecture blueprint in clear terms for public understanding. Co-governed the design and delivery of a scientific use cases workshops and reports. explorin8 on research opportunities and challenges alne with the DARE UK vision. Advised on the conceptualisation and design of a new DARE UK brand identity and website to improve clarity of purpose and accessibtlily. Co-planned, attended. and contributed to variou5 DARE UK online and in-person events. including projert showcases. community group events, and rewrt playback and review sessions. li
HEALTH DATA RESEARCH UK TRUSTEES, REPORT FOR THE YEAR ENDED 31 MARCH 2024 Plans for future periods April 2024 will mark the start of Health Data Research UK'5 second year of r(s second qurnovennial cycle, with our core funders - nine of the largest government and charity research funders in the UK - havin8 awarded u5 £71.3 million for the years 2023 to 2028. While the institute's long-terrn vision for large Scale data and advanced ana11c5 to benefit every patient interaction. clinical trial and biomedical discovery and to enhance public health remain5 unchanged. we will follow a refreshed plan to increase the speed, scale and quality of health data science and so enable new discoveries. In 2024125 we will align efforts around four. focused and tactically important objectNes. which will enhance integrated delivery of existing programmes l. Accelerate access to large-scale data- by"getting the basics righf Support implementation of Unifying Health Dats Review to improve UK-wide data access and data availability Work in partnership with the NHS England Data for R&D programme to delNer single front door to SDE network Demonstrate the potential of OMOP Common Data Model as arh enabler of efficient cros5-re8ionln8tion research studies 2. Accelèrate delivery of impatt to the NHS. patients and the public across the UK Ensuring that research data insight5 generated across the institute, respond and inform UK-wide health policy needs as rapidly as possible 3. Push the boundaries of Equality. 04¥ersity and Indu5ion Ensure flagship activities such as the Black Internship Programme scale effectivelv Ensure current EDI artivitie5 across the Instituie lincluding data dNersityl align for greater impact 4. Connert instituie healih reseawchers and Infrastructuwe developer5 to deliver user<entred design Make cross-programme integration more efficient and effective Work with partners to develop, embed and share Public and Patient Involvement and Engagement good pr3ctiee The current fragmentation and lack of standardisation in the data will be tackled by working with many different or8ènis3tions, building capabilities and 5UPPOrtin8 real team 5cience_ Patients and the public will continue to be invofved throughout the Institute's work - ensuring that access to data for research is enabled by trustworthy, safe and secure systems and generate5 public benefit. Some early developments will inclLJde the release of a major new version of the Gateway in 2024. To date, the Gateway has primarily supported the onboardin8 of metadata and the discovery phase of the researcheriourney. The enhanced version will provide much beller value to the community by supporting the complete life cycle of a research project, from concept to dissemination, along With facilitating data discovery. We are enharbcin8 some of the Gateway'5 key functionality to improve its performance. usability. and reuse. The new version will make it easier and fasier for the health data science community to share, discover, request access io, disseminate and collaborate on healih data resources vital for research. Our vision for the Gateway is that it betomes the go-to place for all things sharable about health and associated data. ev01n£ into a platform that is co-created by the community and builds upon existing technolo8ical solutions. 12
HEALTH DATA RESEARCH UK TRUSTEES. REPORT FOR THE YEAR ENDED 31 MARCH 2024 Professor Cathie Sudlow, Chief Scientist at Health Data Research UK. is also due to publish an independent review of the UK'S ability to use data to improve health care. The review wa5 commissione(J by Professor Sir Chris Whitty. the Chief Medical Officer for England. Dr Timothy Ferris. NHS EDgland'5 National Director of Transformation, and the UK'5 National Statistician Professor Sir lan Diamond. The review. entitled Unitin9 Heolth Doto in the UK. will assess the flows of heaFth-relevant data across the four nations of the UK. offering an opportunity for polbcy makers to evaluaie how data can be better managed to improve the public's health. while maintaining privacv and publbc trust. Patient groups have been consufted and have been actively inVoed throughout the process. The DARE UK programme will tran$tIOn into Phase 2 and is proposed to run from 2024 to 2027. The UKRI Programme Board and Delivery Team are tonsidering how best to deliver the programme's ambitions in collaboration with the various sensbtive data research commLbnities and stakeholdeTS. while incorporating and building Upon the full range of output5 from Phase l alongside exploring new and emerging challenges in the UK sensitive data research ecosystem. Phase 2 will consider the inter-disciplinary. ¢ross-domain scientlfic use cases that could be realised through a national interoperable network of secure TRES. resourcing reseaTchers and TRES to work iogether in iackling the governan. technical. and cultural challenges therein. 13
HEALTH DATA RESEARCH UK TRUSTEES, REPORT FOR THE YEAR ENDED 31 MARCH 2024 Financial review Funding Our funds support long-term scientific and research studies. training and infrastructure that contribute to data science at Scale, 5UPPOrt our One Institute approach and delrver long-term impact for the health of patients and populations across the UK. Health Data Research UK'S activity across our strategic priority areas has continued to generate significant interest from funders. Core funding Our funders have jointly invested in Health Data Research UK: the Medical Research Council IMRCI- the health research departments of England, Scotland, Wales and Northern Ireland, National Instituie for Health Re5e8rch INIHRI, Chief Scientist Office ICSOI, Healih and Care Research Wales, HSC Research and Development respectively), the Economic and Social Research Council IESRCI. the EngineeTinB and Physical Sciences Research Council IEPSRCI. Cancer Research UK and The British Heart Foundation I"Core Funders"). In 2022123, the Core Funder5 agreed in principle to provide £71.3m funding to Health Data Research UK in the 5 years to March 2028. During 2023124. the Core Funders agreed to an additional £4.Om unrestricted supplement. and a further £0.6m supplement $trIcted to support the PublTrc Engagement in Data Research Initiative IPEDRII. In line with the Charities SORP IFRS1021 the fv11 £4.6m of Core funding awarded in 2023124 was recognised in 202412023= £71.3ml. Re5trictedfunding Restricted funding is (eived primarily in respect of Health D3ta Research UK'S Infrastructu and SeThices and Research Drwer Programme strategic areas, along with our partnership programmes. The 8HF Oata Science Centre was established to be the UK centre of expertise for cardiovascular data science. funded by the British Heart Foundation12024= £8.7m, 2023.. £8.5ml A series of funds to deliver data research projects in the Brain Health space12024.. £1.9m, 2023- £0.Oml Collaboration5 With a range of charities IDiabetes UK. Stroke Association. Kidney Research UK. Asthma and Lung UK) to establish 'Data Science Catalysts. in their respectNe flds. enabling data science to be conducted at 8reater pace12024-. £1.3m. 2023-. £0.3ml DARE UK- The UK Trusted and Connected Data and Analytics Research Envimnments programme aiming to deliver a national federated digital infrastruclure12024.. £1.8m. 2023- £1.8ml The Sensitive Data Research project. established to implement international data pa55POrt standards and to build a scalable service that streamlines safe researchers access to sensitive data12024.' £1.Om. 2023.. £O.Oml Medical Research Council funding in respect of caprtal investments12024.. £0.8m, 2023.. £1.3ml Other charitable expenditure is funded by other funder5. or through c05t sharing with Health Data Re5earchUK's collaborative partners. Grants Health D3t3 Research UK provides long-term awards to research organisations with a track record of excellence in health data science. Reseorch Driver Progromme5, Inlrostructure Progrummes, und Regional Communities Health Data Research UK has committed to providing £35.Sm of funding over the 5 years to March 2028 to five Research Driver Programmes. three Infrastructure programmes. and nine Regional Communities. Each programme has a lead Research Organisation IROI and a variable number of partner ROS. The lead RO is accountable to sub-contract with it5 associate ROS to ensure delivery of the programme and its objectives and is responsible for financial reportin8 and invoicing to Health Data Research UK. 14
HEALTH DATA RESEARCH UK TRUSTEES. REPORT FOR THE YEAR ENDED 31 MARCH 2024 In 2024 Health Data Research UK funded £3.4m of programme expenditure across the Research Driver progTèmme5. distribuied Infrastructtsre Programmes. and Regional Communtties12023= £01. rroining Progrommes In 2024 Health Data Research UK funded £l.Im PhD Programme expenditure12023-. £1.Iml and £72k Masters programmes expenditure12023: £791kl. Reserves Policy The Core Funders are committed to funding costs incurred by the Institute. with regular funding throughout each financial year. By the natu of this model. there is no need for signifitant reserves. However. the Trustees are satisfied ihai there are sufficient arrangements for the provision of funding for the Company to continue to operate for the foreseeable future. This is based on the requirement for the Company to present forecasts to the end of the current funding period so that comfort Can be gained that all anticipated costs are manageable with agreed fundin8. As at 31 March 2024 total unrestricted reserves were £55.69m12023: £60.66ml and total restiicted reserves were £24.04m12023- £25.4ml. Un(ler the terms.of Health Data Research UK'S existing funding. amounts 8re not permitted to be Set aside for general unre5trtcted reserves- the value of unrestricted reserves is the balance of core funds not yet spent. Risk management Health Data Research UK'S vision and strategy are ambitious and there are Ti5ks that may impact our ability to 5ucce55fully achieve our ambition. Health Data Research UK considers risk marbagement to be fundamental to good mana8ement practice and a Significant 3spett of good charity governance. Health Data Research UK'S risk management wlicies and processes make the effective management of risk an integral part of day-to-day operations at Health Data Research UK and provide a framework to: Define risk governance Identify key ri5k5 Assess risks Develop mitigatin8 Strategies and actions Monitor and review risk activities Communicate and report risks Risk managemeni is an ongoing and dynamic process and Health Data Research UK regularty reviews the risks we face and mitigation strategies. Health Data Research UK has a Risk Register. which is structured in line with Charity Commission guidance. The Risk Register is reviewed and updated by the Executive Committee monthly, reviewed and discussed by Audii & Risk Committee IARCI quarter and reviewed by the full Board quarterly. As a charity, the Board of Heahh Data Research UK are responsible lor total risk exposure. These risk management proce55es are part of our I5091 certrfd quality management system. An ongoing focus for Health Data Research UK is ensuring long term sustainable funding. Health Data Research UK is managing this throvgh ongoing engagement wrth funders, in particular with our core funders. Our core funders are committed to funding Health Oata Research UK until at least 31 March 2028 lend of the second ouinquennium. The Office for National Statistics has looked at Health Data Research UK as part of its ro in determining whether or8anis3tions should be conSided part of the public sector for calculating economic indicators such as the national debt and public sector employment figures. We are taking steps to show that Health Data Research UK is not part of, nor controlled by, the public sector. 15
HEALTH DATA RESEARCH UK TRUSTEES, REPORT FOR THE YEAR ENDED 31 MARCH 2024 Structure, Governance and Management Status Health Data Research UK is registered as a Company limited by guarantee, incorporated in July 2017, and a re8lStered charty, registered 12 May 2021 (charity number 11944311. The Board of Trustees govern the Company in accordance with its Memorandum and Articl of Association. The Trustees have the benefit of a qualrfying third-party indemnity provision as defined by section 234 of the Companies Act 2006. Recruitment of Trustees The Board makes Trv5tee appointments for terms.of three yeaTs, with an extension of up lo two further term5. All Tnjstees give of their time freely. with the OLttgoing Chair CeiVing a remuneration which was paid during the year unttl he retired in July 2023. The incumbent Chair is noi remunerated. Details of Trustee expenses and related party transactions are disclosed in note 17 to the account5. New Trustees are appointed through an open public appointment process. depending on the experience and key skills needed. New Tiustees are recommended by the Nominations Committee and are formally appointed in accordance with the Articles. Training and Induction On appointment, new Trustees follow a formal induction programme. which include5 initial meetinES Wlth the Chair and the Trustee. provision of training via an online learning system and the provision of key governance documentation. Ongoing training is provided for Tnjstees as relevant throughout their term. Training has been provided to ensure Trustees are aware of their SponSIbl11es as both company directors and charity trustees. Organisational structure The Board provides leadership and governance to rhe Health Data Research UK. This is a strategic role that involves ensurin8 over518ht. compliance and performance rnana8ement. The Board rneet5 at least four times per year. Day-to-day responsibility for the running of Health Data Research UK is delegated to the Director. The Director is supported by an executive management team which contains the appropriate range of skills to ensure competent management of Health Data Research UK. Health Dt7to Re5eorch UK ht75 three Boord Committees: The Audit and Risk Committee is responsible for advising the Board on financial management and reporting. the relationship wilh external auditors and risk management. The Nominations Comrnittee is sponsible for advising the Board on Board recruitment and skills requiremenl. The Remuneration Committee is responsible for advising the Board on the remuneration of the Institute's key management personnel in the context of appropriate comparators and sector benchmark5. 16
HEALTH DATA RESEARCH UK TRUSTEES. REPORT FOR THE YEAR ENDED 31 MARCH 2024 Trustees, Duty to promote the success of the Charity - Section 172 Statement Section 1721-s.17Z-l of the Companies Att 2CKJ6 requi the Trustees of Health Data Research UK Ithe-charirf or"HOR UK") to act in a way that they consider promote5. in good faith. the success of Health Dats Research UK for the benefit of its members as a whole. In doin8 this, s.172 requires Trustees to have regard. amongst other matter5. to the.. lal likely consequences of any decisions in the lofig term.. Ibl interests of Health Oata Researth UK'S employees- lel need to foster Health Data Research UK'S bvsiness rdationships with suppliers. customers. and others.. Idl impact of Health Data Aesearch UK'5 operations on the tommunity and the envIrMent.. lel -desirability of the Charity in maintaining a reputation for high standard5 01 business tonduct,. and In need to act fairly a5 between members of Health Data Research UK. The Trustees of Health Data Researth UK fully embrace and support these reporting requirements. The Trustees ceIve regular training on their obligations and have access to advice from the Head of Legal. Trust and Ethics and from the Company Secretary when required. By havin8 a 8ood 8o¥emance framework and procedures in place. the Trustees ensure that their decision making is open and transparent. decisions are sustainable in the long term and do notdisproporrionately affect any single stakeholder8roup. We Set out below how Health Data Research UK has conside the matters found in s.172. First, we explain some of the key decision5 taken by the Trustees over the past year and how stakeholder interests weie considered over the course of decision-making, in line with Healih Data Research UK'S values. Then we outline how we engage with our 5takeholder5 generaSly and the influence thai such en8a8ements have on our decision makinB. Key decisions of 2023 to 2024 Transition to the fNe- arstr The Trustees continually review Health Data Research UK'S strategy. As part of thi5. the Trustee5 consider Health Data Researih UK'S business plan for the coming year, its budget and the impact that deosions will have in the long term. In considering the long-term success of Health Data Research U[ the Trustees en8a8ed with various stakeholders to create an ambitious new straiegy for the next fwe years. starting in 2023. The new strategy sets out an innovative programme to increase the scale. qvality. Speed and impart ol insights deiNed from health data research in the UK and internationally. By 2028. the Institute will be well posltioned to move forward to the next stage of its 20-year vision 'for large-scale data and advanced analytics to benefit every patient interaction. clinical trial. and biornedscal discovery and toenhance public health.. and to be at the cenlre of a global. collaborative network of healih data science. Health Data Research UK has focused on the transition to its future five-ye3r Strategy. particularly on three integrated areas of activity to deliver this ambition induding: 111 Accelerate Trustworthy Oata Use. 121 Empower Researcher5.' and 131 Promote Partnership5. Health Data Research UKwill tontinuetowothwth its partners andfvnders towards itsfuture vision."The breadth of support for Health Data Research UK'S vision and strategy is clearfy demonstrated by letter5 015UPPOrt received durin8 Health Dats Research UK'S stakeholder engagement process. By brin8in8 tO8ether diverse health data science. Health Data Research UK will advance research discoveries and accelerate insi8hts ihat benefit patients and the public acJoss the UK and 8loballv. Pairtt and Public In¥d¥ement and En em The involvement and en8a8ement of patients and the public in governance. inlrastrurture developments. and research ensures Health Data Research UK'S work is tndusive. trustworthy. and driven by delivering public benefits. 17
HEALTH DATA RESEARCH UK TRUSTEES. REPORT FOR THE YEAR ENDEO 31 MARCH 2024 Health Dèta Research UK is committed to raisin8 awareness of health data research and working patients and the public io ensure their voices shape the access and use of health data for researd) that improves people's lives and delivers benefits for all. 8y providing opportunities such a5 joinin8 Health Data Research UK'S Public Advi50ry Board or participarin8 in campa48ns like Doro Sove Lives.. MerttolHeolrh. pètients and the public makes a Significant impact on Health Data Research UK'S work and contribute to the advancement of its mission. Health Data Research UK i01veS and engages patients and the public through various means, indudin8: Seekin8 advice from the Public Advisory Board and implefflertting the feedback received Conducting public £on5ultation5 to gather diverse per5pective5 on health data research rnatters Organising acce55ible and inclusive public events to raise awarenes5 of health data and encourage involvement in related research Creating opporruniries to shaping health data research. from design lo disseminatron and evaluation stages Sharing relevant Infomiation and Updates through webpage, social media, and newsletters. Charn in Data 5ripnte The Board is committed to developin8 an inclusive cvliure that promotes diversity. Opportunities have been provided to those from socio-economic background5 that are currently underrepresented within health data saen. In response to the significant underpreSentation of Black people in data science. Health Data Research UK launched a Black Internship Programme with inierns matched to data roles in Alliance partner or8anisations. The 81ack Internship pro8ramme is currently in its third year. Health Data Researth UK is pleased that many candidates went on to secure roles in the field. Open discusyons about issues faced in the workplace have fed into Health Oata Research UK'S strategy. To 5UPPOrt Health Data Research UK'S agenda, Health Data Research UK is lookin8 to continue to attract and retain people from diverse backgrounds. This infOrceS Heèlih Oata Research UK'S open and honest approach to tommunicating with its people on Matters of gender and ethnicity. The bu5ine55e5 goa15 will be tracked on a frequent bas15. Stakeholder Engagement We set out below how we engage with our key stakehdders= The Public and Patients ement The public and patients are eritital to Health Data Researth UK. Health Data Researth UK aims to work in partnership with the public and patients to ensure transparency to build trustworthiness in data initiatives. Health Data Research UK'S innovatnfe approach to brin8 public e$ in quickly and effectively has shaped Search and improved outcomes with thousartds of patients and members of the public eorttributin8 to Health Data Research UK'S work. How thi5 en ernent influenced Board di5CU5sions and decision maki Health Oata Research LIK has widened its public en8a8ement and reach through social media. press campai8ns, and events. showtasing the benefits and impatt of data. Insights are regulaily shared with the Btsard thrOh qvarterly Ml packs. 18
EALTH DATA RESEARCH UK TRUSTEES. REPORT FOR THE YEAR ENDED 31 MARCH 2024 Funders ement Health Data Research UK liaised and interacted with its fundets to understand those aspetts whith are uppermost on theif agendas. How this en ement influenced Board discussions and decision makin Insi8hts are regularly shared with the 8oard throu8h qvarterly Management Information packs. Trustees and members of the executive regularfy seek and review feedbatk from funders. which dIrett feed into Board discussions and infomi strate8ic decision makin8. Employees ement By engaging with its people. Health Data Research UK will achieve its aim of advancin8 research discoveries and acceleratin8 insights that benefit patients and the public acro55 the UK and Eloballv. Health Data Research UK'S employees are a stron8 and talented group of people who work with skill and enthusiasm. We seek re8ulai feedback through staff surveys to assess employee en8a8ement, reduce employee attririon and build stronger team5. How this en ement infl en ed8 kin Understanding staff seniiment helps Health Oata Research UK to vnderstand how to improve its relationship with employees. Health Data Re5£arch UK continue5 to builij a working environment that advances equity. diversity and inclu5i0n. Partnerships and Suppliers Health Data Research UK'S partnerships have continued togrow and flourish during the year which demonstrates the value ol combining expertise to deliver further and faster on joint ambitions. Health Data Research UK partners with various institutes to further advance its health earch to improve patbent ca. How this Èn ement inftuented Board diseussion5 and detision making embers of the executive regulady seek feedbxk from Partner5 and Suppliers. which feed into Board distussions and inform strategic decision making. Widef Community Health Data Research UK'S solutions directty and indirertly impart a whole host of stakeholders including patients and public, daia tustodians and researthers. By operating responsibly and sustainably. Health Data Research UK increases accessibility to its service5 which 15 core to it5 purpose. How this en ement influenced Board discussions and decision makin The work of Health Data Research UK is centred around medical innovation foT the benefit of all.. Uniting health data by bringing together the UK'S dataset5 and making them safely and Securely di5covevable and atcessible lor research throu8h the UK Health Data Alliance and Innovation Gateway. in a way that earns the trust of patients and the public. Improving health data by providing tools. methods. hubs. and national expertise in health datè quality improvement lor researchers and innovarors. Enabling research and innovation thai h35 a large+scale impact. demonstyating novel approaches to health dats use, and establishing an expert group of national research leaders in health data Science. The Trustee5 are mindful of the impart that the business and 501ution5 have on the widercommunity. Health Data Research UK'S science strntegy is centd on prioritising areas that will have the maximum impact for the health of patients and population5 acros5 the UK. 19
HEALTH DATA RESEARCH UK TRUSTEES, REPORT FOR THE YEAR ENDED 31 MARCH 2024 Relationships with other organisations A number of Trustees. key management or their close family members hokl positions in other organisations with which Health Data Research UK has significant rel3tionships= Organisation Relationship to Health Data Rese•r¢h UK UK Research and Innovation 15 a member of the Company. UKRI brings together the seven research councils. Innovate UK and Research England. UKRI provides fundin8 8rants to the Company through the Medical Research Council and Innovate UK. Trustee / key irt¥olvement Dr Graharn Spittle is a Council Member of the Medical Research Council management Medical Research Council (part of UK Research and Innovation) Innovate UK Ipart of UK Research and Innovation) Professor Sir James Smith's spouse was fomierty Executive Chair of the Medical Research Council from April 2018 to January 2022 Professor SirAlex Markham is Non- Executive Director of Innovate UK, Medicine5 Discovery Catapult Dr Claire Newland is the Medical Research Council Director of Policy, Eth & Governance Professor Dame Janet Thornton is a recipient of Biotethnology and Biological Sciences Research Council IBBSRCI I MRC grant funding until December 2024. Professor Emity jefferson is Vice Chair of the IBBSRCI I MRC Supercomputing Taskforce. Member of the Longitudinal Population StLbdies Strategic Advisory Panel, MRC and Member of the MRC Longitudinal PopulatKJn Studies Task and Finish Group Professor Cathie Sudlow is Deputy Chair of the MRC Data Science Advisory Group The University of Edinburgh Co-ordinating Research Organisation of the Healih Dat Research UK Scotland Substantive Srte and lead for Health Data Research UK'5 Applied Analytics national research priority. Professor Andrew Morris is Vice Principal and Professor of Medicine at the Unwer5ity of EdintrMJrgh Dr Graham Spittle is Dean of Innovation at the University of Edinbur8h Professor Cathie Sudlow Professor of NeurogY and Clinical Lead organi5ation for BREATHE Health Data Research Hub for Respiratory Health. BREATHE is a 20
HEALTH DATA RESEARCH UK TRUSTEES, REPORT FOR THE YEAR ENDED 31 MARCH 2024 rnember of the UK Health Data Research Alliance and re repsented on the Alliance Council Epidemiology at the University of Edinburgh Liz Lovejoy's partner is Chair of Applied Logic and was Vice Principal and Head of College of Science and Engineerin8 at the University of Edinburgh The University of Edinburgh is the recipient of grants throueh Core funds. the Data and Connectivity.. National Core Studies programme. and The Alan Turing Institute Health Oata Research UK D&C Funding Call. Scott15h Government members are represented on the Allian Council. NHS Scotland and Public Health Scotland are Allian member organisations. Imperial College Healthcare NHS TTUSt is an Alliance member and is represented on the Alliènte Council. Department of Health and Social care is a funder for the Winter Pre5sure5 fund. Scott15h Government Professor Andrew Morris is Chair of the Scottish Government Standing Committee on Pandemics and of ihe Scottish Government COVID-19 CMO advisoryGroup. Imperial College Healthcare NHS Trust Professor The Lord Ara Darzi 15 Consultant Surgeon at Imperial College Healthca NHS Trust. Oepartment of Health & Social Care Professor The Lord Ara Darzi is a Member the Recovery. Resilience and Growth Oversight Group IRRGI, Department of Health & Social Care Professor Sarah Harper is Professor of Gerontology. University of Oxford QResearch is a not-for-profit collaboration between the University of Oxford and EMIS. QResearch is an Alliance member and is represented on the Alliance Council. The Univer5ily of Oxford is the co- ordinating Research OrganisatTron of the Health Data Research UK Oxford Region. The University of Oxford is the recipient of grants through Core fLbnds. NHS Englantl are repsented on the Alliance Council Imperial College London is part of the Health Data Research UK London Region. Until 31 May 2023. Professor Trudie Lang IHealth Data Research UK'S Global Research 01ctor1 was seconded to Health Oata Research UK from Oxford university. NHS England Sir Mark Walport is a Non- Executive Director of NHS England. ProfessorThe Lord Ara Darzi is Paul Hamlyn Chair & Co-Director of the Institute "of Global Health Innovation, Imperial College London. Imperial College London Imperial College London is a recipient of. Core funding via University College London as part Lord James O'shaughnessy is Visiting Professor at the Institute of 21
HEALTH DATA RESEARCH UK TRUSTEES. REPORT FOR THE YEAR ENDED 31 MARCH 2024 of the Health Data Research UK London Substantive Site Global Health Innovation. Imperial College London. Sir Mark Walport is Honorary Distinguished Professor of Medicine. Imperial College London and Chair of Imperial College Health Partners. Professor Cathie Sudlow is a Member of the External Advisory Board, UKRI CDT in Al for Healthcare, Imperial College London Sir Mark Walport is Chair of Imperial College Academic Health Sciences Centre Partnership Board Imperial College Academic Health Sciences Centre Partnership Board Imperial College Healthcare NHS Tru51 15 an Alliance member and is represented on the Alliance Council. Research Data Scotland are an Alli3nce member have represerbtatNe on the Alliance Council. Research Data Scotland Board Professor Andrew Morris was in attendance ai Research Oata Scotland Board NIHR NIHR Clinical Research Network and NIHR 8ioresource are both Alliance members and have representative within the Alliance Council Professor Cathie Sudlow is Member of the UK Government Clinical Research Recovery, Resilience and Growth Programme Data and DigTrtal Subgroup. UK Government. NHS Transformation Diredorate, NIHR Professor Emily Jefferson is a Member of the Imaging Science Delivery Group, NIHR University of Dundee Partner Organisation wtthin the Health Data Research Scotland Region and lead for the Alleviate Hub Professor Emily Jefferson's academic appointment was at University of Dundee Ivntil April 20241. In accordance with ihe Institute's policy, Tru5tee5 are Tequired to di5tlose all relevant interest5 and re815terthem with the Chair of Trustees and to withdraw from decisions where a conflict of interest arises. Health Data Research UK'S register of interests is published on the website= www.h content loads 2022 HDR-VK-Re 1Ster-of-Iniere5t5-07 22. df. Full details of Related Party Transactions a included at note 17 of the financial statement5. 22
HEALTH DATA RESEARCH UK TRUSTEES. REPORT FOR THE YEAR ENDEO 31 MARCH 2024 Objectives and activity Objectives Health Data Research UK'S main objectives. as set out in the Articles of Association. are to improve. protect. preserve and advance the health of the public in particular Lwt without limitation through the use of health data science by.. the development and application of biomedical and health data research. the development of the tools. technologies, skills and partnerships qUired to transform health informatics research and innovation. the sharing of information to advance the understandin& prevention. diagnosis and treatment of diseases to achieve better health outcomes for the benefrt of the public. the advancement of medical and health research. in particular but without limitation by undertakin& promotin& disseminating and improving research into biomedical and health informatics. Aims. objective and strategy to achieve Health Oata Research UK'S objective Health Data Research UK h8s been established to work with a wide range of health data from the NHS. universitie5. research institute5 and charitie5. and increasingly from wearables, and private companies. Over the next 5 years. health research datasets. participants and uses will grow rapidly Health Data Research UK will position the UK to lead health data science internationally with our national. pan-sector approach. Our strategy will be delivered via the infrastrutture we have started to create. Public benefit The Truslee5 have referred io the guidance contained on the Charity comms1On'S general guidance on public benefit and eonsider Health Data Research UK to be a public benefit entity. Going Concern Health Data Research UK has committed CO funding in place to cover its activit*s until 31 March 2028- grant agreement from the Medical Research Council to Heahh Data Research UK for £71.3m was signed 5th April 2023. The Trustees have thefore been abbe to satisfy themSeeS that the Company is able to continue as a going concern. Streamline Energy and Carbon Reporting The 2018 Streamlined Energy and Carbon Reportin8 Regulations. imposed by the 2019 SECR re8ulation5, require large unouoted companies to include energy and carbon information within their trustees, report. for any period beginning on or after l April 2019. Health Data Research UK did not consume more than 40,In) kwh of energy in this reporting period. therefore it has qualified as a low energy user and is exempt from reporting under the streamlined EnerBy and Carbon Reporting1SECRI. Audit informati The Trustees who were in office at the date of approval of these financial statements have confirmed that. as far a5 they can reasonably ensure. all relevant audit information has been provided to the auditors: and the Trustees have taken all the steps that they ought to have taken as trustees in order to make themselves aware of any relevant audit information and to establish that the Compan5 auditors are aware of that information. 23
HEALTH DATA RESEARCH UK TRUSTEES. REPORT FOR ThE YEAR ENDED 31 MARCH 2024 Statement ol Trustee< Respon5ibilitios The Trustees Iwho are also directors of Health Data Research UK for the purposes of company lawl are responsible for preparing the Trustees, report and the financial statements in accordance with applicable law and United Kingdom Accounting Standard5 Iurhited Kingdom Generally Accepted Accounting Practice). Company law requires the Trustees to prepare financial statements for each linancial year. Under company law the Trustee5 must not approve the financial 5tatement5 unle55 they are 5atisfTred that they give a true and fair view of the state of affairs of the charitable company and of the incoming resources and application of resources. including the income and expenditure. of the charitable company for that period. In preparing these financial statements, the Trustees are required to: select suitable accounting policies and then apply them Consistent.. observe the methods and principles in the Charities SORP- make jud8menis and accounting estimates th8t are reasonable and prudeni,. State whether applicable UK Accountin8 Standards have been followed, subject to any rnaterial departures disclosed and explained in the financial statements.. and prepare the financial statements on the going Conrn basis unless it 15 inappropriate to presume that the charitable company will continue in operation. The Trustees are responsible for keeping adequate accounting records that are SLtfficient to show and explain the charitable company's transactions and disclose wrth reasonable accuracy at any time the financial position of the chaTltable company and enable them to ensure that the financial 5tatement5 comply with the Companies Act 2006. They are also responsible for safeguarding the assets of the charitable company ènd hence for taking reasonable steps for the PreVentn and detection of fraud and other irregularities. The Trustees are responsible for the maintenance and integrity of the corporate and financial information included on the charitable company'5 website. Legislation in the United Kingdorn governin8 the preparation and dissemination of financial statements may differ from legislation in other jurisdictions. So far as each of the Trustees is awa at the time the port is approved= there is no relevant audit information of which the company's auditors are unaware.. the Trustees have taken all steps that they ought to have taken to make themselves aware of any relevant audit information and to establish ihat the auditors are awa of that infomiation,. and there were no serious incidents durin8 the prevK)us financial yearthai should have been reported to the Charity Commission but were not. Approval This Trustees, report including the Strategic report was approved bythe 8oard of Trustees on 26 September 2024 and signed on their behaw by.. Dame Julie Moore Chair of the Board of Trustees 24
HEALTH DATA RESEARCH UK INDEPENDENT AUDITORS REPORT FOR THE YEAR ENDED 31 MARCH 2024 Opinion We have audited the financial statements of Heath Data Research UK for the year ended 31 March 2024 whith comprise the Statement of Financial Activities. Balance sheet. the statement of cash flows and the related notes to the financial statements, including a summary of significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including Financial Reporting Standard 102 The Fint7ncit71 Reporting Stondordopplicoble in the UK ond Republic of Irelond (United Kingdom Generally Accepted Accounting Practice). In our opinion, the financial statements= give a true and fair view of the state of the charitable company's affairs a5 at 31 Marth 2024 and of the charitable compan5 net movement in funds, inclu(ling the income and expenditure, for the year then ended- have been properly ppared in accordan with United Kingdom Generally Accepted Accounting Practice.. and have been prepared in accordance with the requirement5 of the Companies Act 2CK)6. Basis for opinion We conducted our audit in accordance with International Standards on Auditin8 IUKI IISAS IUKI} and applicable law. Our responsibilities under those siandards are further described in the Avditorfs responsibilitie5for the audit of the financial 5tatement5 section of our report. We are independent of the charity in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, inclu(Jin8 the FRC'S Ethical Standard, and we have fulfilled our other ethical responsibilitie5 in accordante with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion. Conclusions relating to going concern In auditing the financial statement5. we have concluded thai the trustees. use of the going concern basis of accounting in the preparation of the financial statements is appropriate. Based on the work we have performed. we have not identified any material uncertainties relating to events or condttions that. individually or collectively. may cast significant doubt on the charitable company'5 ability to continue as a going concern for a period of at leasi twefve months from when the financial statements are authorised for issue. Our responsibilities and the responsibilities of the irustees with respect to going concern are described in the relevant sections of this report. Other information The trustees are responsible for the other information. The other information comprises the information include(l in the Trustees, Annual Report Our opinion on the financial statements does not tover the other information and. except to the extent otherwse explicitly stated in our rep)rt, we do not express any form of assurance conclusion thereon. In connection with our aLtdit of the financial statements. our responsibility is to read the other information and, in doing so, Consider whether the other Information is materially inconsistent with the financial statements. or our knowledge obtained in the audit or otherwise appears to be materially misstated. If we identify Such material 25
HEALTH DATA RESEARCH UK INDEPENDENT AUDITORS REPORT FOR THE YEAR ENDED 31 MARCH 2024 incon515tencies or apparent material mis5latements. we are required to determine whether there is a material misstatement in the financial statements or a material misstatement of the other information. If. based on the work we have performed, we conclutle that there is a material mi55tatement of this other information, we are required to report that fact. We have nothing to report in this regard. Opinions on other matters prescribed by the Companies Act 2006 In our opinion. based on the work undertaken in the course of the audit: the information given in the Tru5tees' Annual RepK)rt (which include5 the strategic report and the directOf5' report prepared for the purposes of company lawl forthe financial yearforwhich the financial statements are prepared is consistent with the financial statements.. and the strategic report and the directors. POrt in¢lude(I within the Trustees. Annual Report have been prepared in accordance wilh applicable legal requirernents. Matters on which we are required to report by exception In the light of the knowledge and understanding of the Charitable Company and rts environment obtaine(J in the course of the audit, we h8ve not ideniified material misstatements in the Trv5tees' Annual Report Iwhich incorporates the strategic report and the directors, report). We have noihing to report in respect of the following matters irh relation to which the Companies Act 2(K)6 requires us to report to you if. in our opinion.. adequate accounting records have not been kept by the charitsble company- or the charitable company financial statements are not in agreernent with the accounting re¢or(Js and retvrns,. or certain (Jisclosures of trustees. Temuneration specified by law are not made,. or we have not received all the information and explanations we require for our audit. Responsibilities of trustees for the financial statements As explained more fulty in the trustees, responsibilities statement set out on page 28. the trustees Iwho are a150 the directors of the charitable company for the purposes of company lawl are responsible for the preparation of the financial statements and for being satisfied that they give a true and fair view, and for such internal control as the trustees determine is necessary to enable the preparation of financial Statements ihat are free from material misstatement, whether due to fraud or error. In preparing the financial statements, the twstees are spOnSible for assessing the charitable company's ability to continue as a going concern, disclosing, as applitable, matters related to going Concern and using the going Concern basis of accounting unless the trustees either intend to liquidate the charitable company or to cease operations, or have no realistic alternative but to do $0. Auditor'5 responsibilities for the audit of the financial statements Our objectives are to obtain reasonable assurance about whether the financial siatements as a whole are free from material misstatement, whether (Jue to fraud or error. and to issue an auditols report that Includes our opinion. Reasonable assurance is a high level of assuran. but is not a guarantee that an audit conducted in accordance with ISAS IUKI will always detect a material misstatement when it exists. Mtsstatements can arise from fraud or error and are considered material if. individually or in the ag8Bare. they could reasonably be expected to influence the economic decisions of users taken on the basi5 of these financial statement5. Irregularities. including fraud. are instances of non-compliance with laws and regulations. We design procedure5 in line with our responsibilities. outlined above. to detect material misstatements in respert of irregularities. 26
HEALTH DATA RESEARCH UK INDEPENDENT AUDITORS REPORT FOR THE YEAR ENDED 31 RCH 2024 intluding fraud. The extent to which our procedures are capable of detectin8 irregularitie5, including fraud is detailed bek)w'. Based on our understanding of the charitable company and the environment in which it operates. we identified that the principal risk5 of non-compliance with laws and regulafions related to Charity and Company Law applicable in England and Wale5. and we considered the extent to which non-compliance might have a material effect on the financial statements. We also considered those laws ènd regulations that have a direct impact on the preparation of the financial statements such as the Companies Act 2(M)6 and the Charities Act 2011, and consider other factors such as payroll tax and income tax. We evaluated manaEemenV5 incentives and opportunities for fraudulent manipulation of the financial statements (including the risk of override of controls). and determined that the principal risks were related to posting inappropriate journal entries to revenue and management bias in accounting estimates. Audit procedures performed by the engagement team included= Inspecting correspondence with regulators and tax authorities- Discussions with management including consideration of known or suspected instances of non- tompliante with laws, regulation and fraud- Evaluating managemenys contro15 designed to prevent and detect irregularities.. Identifying and testing journals using data analytics software: and Challengin8 assumptions and judgements made by management in their critical accounting estimate5 8ecause of the inherent limitations of an audit. the is a risk that we will not detett all irre8vlarities, includin8 those leadtng to a material misstatement in the financial statements or non-compliance with regulation. This risk increa5e5 the more that compliance with a law or regulation is removed from the events and transactions reflected in the financial statements. as we will be less likely to become aware of in5tantes of non-compliante. The risk is also greater regarding trregularitres occurring due to fraud rather than error. as fraud invofves intentional concealment, forgery, collusion. omission or misrepresentation. A further description of our responsibilitie5 for the audit of the firbancial statÈmÈnts is k)cated on the Fin3ncial Reporting Council's web51te at.. www.frc.o auditorsres nsibilities. This description forms part of our auditorfs report. Use of our report This report is made solely to the charitable company's member5. as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006. Our audit work has been undertaken 50 that we might state to the charitable tompany's members those maiters we are required to stale to them in an Auditor's report and for no other purpose. To the fullest extent permitted by law. we do not accept or assurne responsibility to anyone other than the charitable company and the charitable company's members. as a body. for our audit work. for this report, or for the opinions we have formed. Kathryn Burton (Senior Statutory Auditor) For and on beh3lf of Haysmacintyre LLP. Statutory Auditor 10 Queen Street Plate London EC4R IAG Date: 31 October 2024 27
HEALTH DATA RESEARCH UK STATEMENT OF FINANCIAL ACTIVITIES INCLUDING INCOME AND EXPENDITURE ACCOUNT FOR THE YEAR ENOED 31 MARCH 2024 Total 2024 Total 1023 £'WD FuTh45 FuTrJ% Income from: Donations 7,124 11.124 22 85,619 Investments 22 Otherincome 35 95 Total intome. 4.057 7,185 11,241 85,623 Expendiiure on.. Charitable activities 'Resea¥ch 9.024 8.533 17,557 31.550 Total expenditure 9.024 8.S33 17.557 31,$50 t4et incomellexpenrfrturel l)eforeiranslers 14,9671 113481 16,3161 54.073 Net movement in furbd5 14.9671 11.3481 16.3161 54.073 Retontiliation of fund5 Total fu$ broughr lorwird 25.389 86.053 3LY80 Total funds CaNfdd forward 55.697 24.040 79,737 86,053 All of the above result5 are froffl continuing Ktivitie5. The notes ort pages 31 to 48 form part of these financial statements. 28
HEALTH DATA RESEARCH UK BALANCE SHEET AS AT 31 MARCH 2024 Company registration number.. 10887014 {England and Wales) Registered Charity number 1194431 2024 2023 otes £*oo FIXEDA55ETS Intanwble as5et5 Tangible assets 46 167 50 213 140 CVRftElnASSUS Debtors 75.218 8.502 87.221 Cash at bank and in har 13 8.146 83.720 95,367 CREDITORS.. arnounts falling due within one year 14,1% 19.4551 19.4541 NET CURRENT ASSET51 IUABILITIES) 79.524 85.913 NET ASSETSI ILIA8IUTIESI 79.737 86.053 CHARITY FUND5 Unrestricted funds io 55,697 60.664 R¢strirted io 24.010 25.389 TOTAL FUNDS 79,737 86.053 The financial statements were appro¥ed by the Board of Trustees and authorised for issue on 26 September 2024 and art signed on its behalf by.. Darne Julie Moore Chair of the Board of Trustees The notes on pages 31 to 48 fomi part of these financial siatements. 29
HEALTH DATA RESEARCH UK STATEMENT OF CASHFLOWS FOR THE YEAR ENDED 31 MARCH 2024 2023 Cash Ilows Iraffl operatin8 Xtiwties Ner cash outflow pro¥Nled by operatinÈatti¥ities 12 486 16,4251 Cash f1th1 fr(wn in¥estini acti¥iti¢5 Interest received Purchase of tangiNe 3nd int3ngible fixed assets 22 11521 11301 1481 Change in cash and cash eqalents lo theyear 3% 16.4731 CJ5h and cash e4uivalent5 brou8ht forw4r 8.146 14.619 Cash and $b equi¥*ems uryied fory¥¥d 13 8.502 8.146 A net debt reconciliation note has not been preSertd as the charity has no debt. The notes on pa8es 31 to 48 form part of the financial statements. 30
HEALTH DATA RESEARCH UK NOTES TO THE FINANCIAL STATEMENTS FOR YEAR ENDED 31 MARCH 2024 A¢countinz p9115 1.1 Gtneial informali Health Data Research 15 a Charity and company limited by guarantee and 15 registered in England and Wales. The registered office and the addre55 of the principal place of business is Wellcome Trust. Gibbs Buildin& 215 Eu5ton Road, London. NWI 2BE. 1.2 Basis of preparation of fmancvdl slalemèfvts The financial statements have been prepared in accordante with the Charities SORP IFRS 1021 Accountin8 and Reporting by Charities.. Statement of Recommended Practice applicable to charitie5 preparin8 their accounts in accordance with the Financial Reportin8 Standard applicable in the UK and Republic of Ireland IFRS 1021 leffectrve I January 20191. the Financial Reporting Standard applicable in the UK and Republic ol Ireland IFRS 1021 and the Companies Act 2CQ6. Health Data Research UK meets the definition of a public benefit entity under FRS 102. Aet5 2nd li3bil¢ties are initially recognised at historical cost or transattion value unless otherwise stated in the relevant accounting policy. 1.3 Fund accounttng General furbds a unrestricted funds whtch are available for use zt the discretion of the Trustees in furtherance of the general objectives of the Company and which have not been desi8nated for other purposes. Aestricted funds are funds which are to be used in accordance with 5pEcific restrictions imposed by donors or which have been raised bythe Company for particular purpose5. The c05t5 of raising and administering such funds are charged against the specific fund. The aim and use of each restricted fund is set out in the nores to the financial statements (Note 131. Investment incorne. gains and1055es are allocated to the appropriate funds. 1.4 Income All income 15 recogni5ed once the Company has entitlement to the income. it is probable that the income will be received, and the amount of income receivable can be measured reliably. Income from grants containing performance conditions is cOgnised as perfomance occurs. with all funding received in advance or in arrears of performance deferred or accwed ac¢ordingty. OthenAfise, income is reco8nised in full as 590n as any other relevant conditions are Salistied. Other income is recognised in the period in which it is receivable and to the extent the goods have been provided or on completion of the service. 31
HEALTH DATA RESEARCH UK NOTES TO THE FINANCIAL STATEMENTS FOR YEAR ENOED 31 MARCH 2024 Accounting polices Icontinuedl 1.6 Expenditure Expenditure is recognised once there 15 3 legal or construrttve obligation to transfer econornic benefit to a third party. it is probable that a transfer of economit benefits will be required in settlernent and the amount of the obligation can be measured reliably. Expenditure is classified by activity and 15 analysed between grant funding arsd the cost of activities performed direttly by Health Data Research UK together Wlth the a550ciated 5UPPOrt Costs including governance costs. The staff cost element of support costs IS attributed togrant makin8 attivities in proportion to grant expenditure and direct expenditure. Irrecoverable VAT is char8ed as a cost against the attivity for which the expenditure was incurred. Govemanee costs are those incurred in connection with administration of the Company and compliance with gn5titutional and ststutory requirements. Grants payable are tharged in the year when the olfer is made except in those cases whert the offer is conditional. such grants being recognised as expenditure when the conditions 3ttachin8 are fulfilled. Grants offered subject to tonditions which have not been met at the year-end are noted as a commitment. but noi accrved as expenditure. 1.7 Golng con¢em The Trusiees tonsider that there are no material uncertainties which cast doubt upon the Charity's ability to continue a5 a gng concern and therefrye consider it appropriate to prepa the financial ststements a 80ing concem basis. 1.8 IniaD8ible fixed assets and amortisaiion Intangible assets cosling £l,CKXI or more are capitalised and recognised when luture economic benefits are probable. and the cost or value of the 35set5 can be measured reliably. Intsn8ible asset5 are initially recognised at cost and are subsequently measured at cost net of amortisation and any provision for impairment. Costs relating ta assets developed internally are capitalised in accordance with the requirements of FRS 102. Amortisation is provtded on intan8ible fixed assets at rates calculated to write off the tost of each asset. less their estimated re$Ul1 value. on a Straht4Ine basis over their expected useful lives= Purchased software licenses The contraciual period Developed 50ftware Straight line over 3- 5 years Website5 Strai8ht line over 3- 5 years A full year of amortisation 15 charged in the year when the asset is ready for use and no amortisation is charged in the year of disposal_ The carrying values of intangible fixed assets are reviewed for impairment when events or changes in circumstances indicate that the carrying amount may not be recoverable. ShortFalls between the carrying value and recoverable amounts are recognised as impaimients_ Impairrnent1055es are recogni5ed in the statement of financial adivities incorporating income and expenditure account 32
HEALTH DATA RESEARCH UK NOTES TO THE FINANCIAL STATEMENTS FOR YEAR ENDED 31 MARCH 2024 Accounting policies l¢ontinuedl 1.9 Tangible fTrxed assets and depreciation l assets costing more than £l.(KKI are (apitalised. Tan8ible fixed assets are carried at cost. net of depreciation and any provision for impairment. Depreciation 15 provided at rates calculated to write off the cost of fixed assets. less th*restimated residual value. on a straight-line basis over their expected useful live5'. Short-term leasehold improvements Leasehold period Office equipment 5 years Computer equipment 5 years A full year of depreciarion is charged in the year when the asset Is ready for use and no depreuation 15 charged in the vear of disposal. A rewew for impaimient of a fixed a55et 15 tarried out if event5 or changes in circumstances indicate that the carrying valuE of any asset May not be recoverable. Shortfalls betweert the cairyin8 value Df fixed assets and their ¥ecoverable amounts are reco8nised as impairments. Imparment losses ace reco8nised in the statement of financial activities incorporating income and expenditure account. 1.10 Operating leases Rents payable under operating leases are charged to the statement of financial athvities incorporating income and expenditure account on a straight-line basis ovei Ihe lease ol the term. 1.11 Interest recefvable Interest on fund5 held on dep051t is incluLled when receivable and the amount can be measured reliably by the Cuinpany.. thSs Is normally upon notih"(ation of the interest paid or payable by the bank. 1.12 Debtofs Trade and other debtors are reco8nised at the settlement amount after any trade discount offered. Prepayments are valued at the amount prepaid net of any trade discounts due. 1.13 Cash at bank and in hand Cash at bank and in hand includes cash and short tem hi8hty liquid investments with a short maturity of three months or less from the date of ac9UlWtion or openin8 of the deposit or similar account. 1.14 Liabillties and piowslons Liabilities are recognised when there is an obligation at the balante sheet date as a resvlt of a past event, it is probable that a transfer 91 economic benefit will be required in settlement, and the amount ol the settlement can be estirnated reliably. Liabilities are reco8nised at the amoynt the Company anticip3te5 It will pay to settle the debt or the amount it has received as idvanced payments for the goods or service5 It must provide. ProvisTron5 are measured at the best estimate ol the amounts required to settle the obligation. Where the effert of the time value of monry is Significant. a d15count rate is applied. The discounl rate that reflects the risk specific to the liability. The unwinding of the discount is recognised within Inte5t payable and similar charye5. 33
HEALTH DATA RESEARCH UK NOTES TO THE FINANCIAL STATEMENTS FOR YEAR ENDED 31 MARCH 2024 Accouniin8 policies l¢ontinued) 1.15 Financial instruments The Company only has financial assets and financial liabilitlE5 of a kind that qualify as basic financial instruments. Basic financial instruments are inrtially recognised at transattion value and subsequently at amortised cost using the effective interest method, less any impairment1055es 1.16 Critical accouniing jud8emefiis and eIaleS The preparation of the financial statements requires management to make judgements, estimates and assumptions that affert the amounts pOrted for assets and liabilities as at the balance sheer date and the amounts reported for revenues and expenses durin8 the year. However, the nature of estimation means that actual outcomes could differ from those estirnate5. 34
HEALTH OATA RESEARCH UK NOTES TO THE FINANCIAL STATEMENTS FOR YEAR ENDED 31 MARCH 2024 ANALYSIS OF EXPENDITURE Oiretl Gr•t funrfinx oladi¥ities Total Total Costs 2024 2013 £'o Charitable actiwties Research 9.921 5.126 2.510 17.557 31,550 Totsl 2024 9.921 5.126 2.510 17.557 31,550 5uppoit Costs premis1 hv Tot41 2024 Total 2023 Charitable activities Research 1.785 659 2,SlO 1,742 Total 2024 1.785 659 2.510 1,742 Health Data Research LIK ha5 one type of artNity. &Jpport C05t5 have been allacated to that one artNity. Go¥Èrnante £osis are included within support Costs. Supportcosts rdated togrant furtdin¢activities induded In total supportcosts above are E576k. 35
HEALTH OATA RESEARCH UK NOTES TO THE FINANCIAL STATEMENTS FOR YEAR ENDED 31 MARCH 2024 ANALYSIS OF EXPENDITURE- Prior year rert GrlIUnding of a(treS supp costs Toial 2023 £'fyJo Total 1022 r0 £'ofyJ Charitable actNitses Aesearch 9.916 19.892 1,742 31.550 32,900 Total 2023 9.916 19.892 1.742 31.550 32.900 Supporr Coms Premises and Other Total Total costs 20Z3 2022 Charitable arti¥ities Researth 1.226 257 259 1.742 2,709 Total 2023 1.226 257 259 l.742 2,709 Healrh Data Research UK has one type of actiwty. Suppm costs ve been alfrxated to that one actiwty Governance costs are included withiTh support C05ts. Support<osts related to yant fvndir¥ artivi5 included in tolal 5UPPOrt costs above are £1.198k. GOVERNANCE COST5 Totsl 2024 Total 2023 Chair remuneration Reirnbur5ement of Trustee & Director Expenses Audit fee indudin8 VAT Non-audit services includin8 VAT Board costs 16 26 17 131 25 125 180 172 Ofthe Mn-audit services. £ISk12023.. £Skl relate5to seMcES wo¥ided by our external audit(Y5. H4Y5ffl4cintyre. 36
HEALTH DATA RESEARCH UK NOTES TO THE FINANCIAL STATEMENTS FOR YEAR ENDED 31 MARCH 2024 STAFF COSTS Total 2024 £¥0 Total 2023 Stall costs were as follows". Stall wages and salarie5 Social security costs Other pension costs Apprenticeship Levy 6.052 713 5.317 659 605 Is 522 19 7.385 6,517 Not included in staff costs were rechar8ed seconded salary costs amountin8 to £1.362k12023.. £1" 106kl and temporèry staff costs of £626k12023= £921kl. Including costs incurred from recharged salary costs charged by third parties. the total compensation of kry management per50nnd was £l.509k12023= £1.IOOkl. Terminatton payments were made to the value of £18k12023: £ISkl_ These were the result of redundancy and settlement payments. The average number of persons employed by the Company during the year was as lollows= 2024 No. 2023 No. 97 87 The number of members of staff whose emoluments. includin8 benefit5 in kind. amounted to gver £60.( were a5 follows.. 2024 2023 £60,CkXI- £?O.cK#) £70,)1 - E80.C £80,001- £90.C £90.001- EI(K),O £icM),ooi- £iio,c £110.001- £I20,C3 £130.001- £140.1XQ £140.001 - £150.LKKI £170.000- E180.0(KJ 16 io 14 io 43 OuriTr8 the year. Dr Graham Spittle. a Trustee, received remunerarion for his services as Chair of £Sk12023.' £16kl (see note 31. Ouring the period. no otherTrustees have been paid any remuneration or receNed any benefits in kind12023-. nil). frustees have been reimbursed for expenses incurred to the total value of £2k during the year. 37
HEALTH DATA RESEARCH UK NOTES TO THE FINANCIAL STATEMENTS FOR YEAR ENOED 31 MARCH 2024 INTANGIBLE FIXED ASSETS Cost At l April 2023 Additions Disposals 206 36 45 At 31 March 2024 198 AmortItIon At l April 2023 Charge for the year Disposals 156 28 1321 At 31 March 2024 152 Carryin8 amount At 31 March 2024 46 At 31 Marth 2023 At 31 March 2024. the valve of capital commitments for intangible fixed assets was £nil12023.. f nill. 38
HEALTH DATA RESEARCH UK NOTES TO THE FINANCIAL STATEMENTS FOR YEAR ENDED 31 MARCH 2024 TANGIBLE FIXEDASSETS short.term Leasehold iryr4)vernerbts Computer equipment Tokl eooo Cost At l April 2023 Additions 25 51 128 113 204 116 Oisposa15 At 31 Marth 2024 25 53 241 319 Depre¢laiion At l April 2023 Charge for the year Disposals 25 32 57 31 114 39 At 31 March 2024 25 39 152 Net book value At 31 March 2024 15 152 167 At 31 March 2023 19 71 90 At 31 Marth 2024. the value of capital commitments fortan8ible fixed assets was £nil12023.. £nill. 39
HEALTH DATA RESEARCH UK NOTES TO THE FINANCIAL STATEMENTS FOR YEAR ENDED 31 MARCH 2024 OEBTORS 2024 2023 £'ooo Trade debtors Prepayments and accfued income Grants Receivable 17 73.853 1.327 83.979 3,241 75.218 87.221 CREDITORS.. Arnounts falling due within one yeaf 2024 2023 Trade creditors Accruals and deferied income Isee below) Accruals for grant payables Social security & other taxes OtkTer credstors 1.053 1.041 2.062 38 8.591 454 165 239 4.196 9,456 Delefied incom* Deferred income at l April 2023 Resources deferred during the year Amounts released from previous years 1271 398 27 Deferred incorne at 31 Marth 2024 398 In 2024 £398k was deferred as amounts received were not utilised in the period. FINANaAL INSTRUMENTS 2024 2023 £Trio Financial assets measured atam¢ytised cost 83,488 95.368 Financial liabilities measured at amortised cost 4.195 9.455 Financial assets measured at amorEised cost comprise cath. trade debtors and.other debtors. Finantièl liabilities measured at amortised cost comprise trade treditors. other taxation and social seeurity. Other creditor5 and accruals.
HEALTH DATA RESEARCH UK NOTES TO THE FINANCIAL STATEMENTS FOR YEAR ENDED 31 MARCH 2024 10. STATEMENT OF FUNDS Movemem in fvr#ls Once * I April 2023 . EXpen¢tre Balance at 31 Marth 2014 ToialUrrt4triCted estrKted tore FuTh4ini British Heart FOndaOn Data kl2nce Cen DARE Phase Ib DARE Ib supplementary awa¥d Dementla Tri315Acceraicr abetes UK Oata kience Cata RespirOtyOata Scien¢e Catat KNln8yOata si(e Cata Stroke Dats Scievte Caiaty5t Oatsmind Hub Yiate Mub RÉPORTER". Tfavmatit Brain Injury Platform AO Data 1Th11t Brain earth Oata Pibls NEURii Brajn Health A<celerator MRC Helfflholll Capital Èlo¢k Grant 23-24 Weiicorne Ttust F(yJi-yearPhD Pr¢yamme in NIHR Winter Piessiire5 Fund 8iomedical Vacarvjn Scholarsp ATI PMO NEW¢a5tltEPSRC Digital Me•lth Hub 8ri5tDI ESPRC 018iral Heatth Hvb AIEheimerf5 Research VK Msc Fundini abetes UK MSC Funding Reseaicher Passports World Class Labsi2123 ca1 gk)ckfyaftt Cap¢al Funds HOR Gknbal Grant COVIO-191fitern4tional Mknce EU Horiion ENTRUST Award SACAO DARE Award luwel FX DARE Award IManche5terl 5ATRE DAPE Award IDundeel NIHA PRACTISE Ivni HDSP 8<iSt + weston NHSTW SlandingToiether Collaborat VITT Consotrwm MAC. PopJKition Aesearch UK proyarnrne Digital Innovation Hub Pro8ramme Manaqemwt Pi8ltal Innovatyon Hub Programme." Phase 3 UKRI". N3ii¢nal Core Studies". Data &CthneCtlfy Phaseo UKRI.. Nationalcore Studie5'. Data &C¢¥v*rtIfy Phase I DARE Pthase i 4.057 19.0241 55.697 J3.(XL) 7.774 L192 555 11,234 11320 6.4)3 343 13431 11261 17 299 300 260 290 297 4] 726 219 398 450 1.141 .475 617 219 398 11091 i( 67 163 L46 260 203 171 IB7 272 21S io 13031 721 202 81 113 83 k.9Y6 97 47 146? 49 61 Tlltal 2S.389 7.184 8.S3J 24.1110 TotJlof Fd5 11241 ii?.ss?I ?9.737 41
HEALTH DATA RESEARCH UK NOTES TO THE FINANCIAL STATEMENTS FOR YEAR ENDED 31 MARCH 2024 io. STATEMENT OF FUNDS Icontinuedl Details of restricted funds are as follows". Fund Core funils- restricted Purp05è Of the total core fvftds awarded to Health Data Research UK £13m are restricted to ecific rammes. To delwer the BHF Data Science Centre for cardiovascular health. British Heart Foundation Data Science Centre DARE- Phases l and Ib- Dèta and Analytics Research Environments To scope out the delivery of a naD"onal federated digital research infrastructure tg establish the next generation of secu. flexible and interoperable environments for connecting and analysing complex and sensitwe multi- disciplinary data at UK scale. UK Dementia Trials Accelerator Collaboration between UK DRI. Mealth Data Research UK and Medicines Discovery Catapuli IMOCI. and funded by the MRQ NIHR and the Office for Life Sciences designed to enabled the UK Government Demeniia Mission, with a vision to rapidly posltion the UK as the destination of choice lor investment and innovation in the delivery ol clinical trials ol new therapies for dementia, rapidly delivering significant atient and NHS benefits. To enhance knowledge of the link5 between diabete5 and cardiovascular disease. facilitate a deeper understandin8 of the causes and progression of diabetes as a major tardiova5cular risk factor. and drive improvements in treatment and prevenrion of diabetes, with associated reduction5 in cardiovascular disease. Funded by Asthma + Lun8 UK. the overarching airn ol the Respiratory Data Catalyst is to ideniify and priociiise key areas of work in respiratory data science research. demonstrating impact at national and international level in dinical prartice. the health system and for people affected b respirato isease_ Funded by KidThey Research UK in partnership with the 8HF. the overarching aim of the Kidney Oata Catalyst 15 to accelerate research at the interface of kidney and ?rdiovas¢ular disease by facilitatin data-led research. The Stroke Data Soence Catalyst is a partnership between the Stroke A550aation. the Briiish Heart Foundation IBHFI and Health Data Research UK (HDR UKI established to champion and enable the power of data to further stroke research. Collaboration wilh the University of Dundee to develop the Alleviate Hub and to integrate the Hub as a Health 03t3 Research hub participatin in the Hubs Network. Collaboration with the University of Swansea to develop the Datamind Hvb and to integrate the Hub as a Health Data Research hub participating in the Hubs Network. A UK-wide research platform - UK-TBI REpository and data PORTal Enabling discoveRv IT81-REPORTERI. led by the University of Cambridge in collaboration with Health Data AeseaTch UK to boost the use of data to advance treatment and care for people with traumatic brain injury. A collaboration between Health Data Research UK. the AD Oata Initiative. the University of Edinburgh, Public Health SCOand IPHSI and Moorfield5 Eye H05Pltal NHS Foundation Trust to support a tyear pilot to make some of ihe UK'S most comprehensive routine health imaging data more findable and accessible for dementia searCh proierts both within the UK and internationally. A collaboration between Health Dzt3 Research UK, the Univetsity of Edinburgh. LifeArc. Eisai and Gates Ventures with the ambitbon to translate healthcare data and di8ltal stiences irtto projects thar can enhance the Quality of life of people livin8 with dementia and contribute to a national data infrastructure in the UK. Forgin8 collaboration on maximising search in environmental health in the UK and German To support Health Data Research UK'S capital investments prograrnrne and assets. Diabetes Data Science Catalyst Respiratory Data Science Catalyst Kidney Data Science Catalyst Srroke Data Science Catalyst Alleviate Hub Datamind Hub TBI-REPORTER.. Traumatyc 8rain Injury Warforni AD Data Initiative Brain Health Data Pilots NEURii Brain Health Accelerator MRC Helmholtz World Class Labs 22123 Capital 81ock Grant 42
HEALTH OATA RESEARCH UK NOTES TO THE FINANCIAL STATEMENTS FOR YEAR ENDED 31 MARCH 2024 Wellcorne Trust PhD To delivef the Health Data Research UK-Turin8Welkome Pho Programme in Health Oata Pro ramme in Science kience NIHR Winter Pressures For the fundin& delivery and management of the Data Science to inforrn NHS Fund corn ound winter pressure policy 8iomedical Vacation To provide 30 Wellcome Biornedical Vacation Stholarship$12020-20241. kholarship ATI PhD Funding arrangements for the PhD Programme Manager Role for the HDRUK Turing Wellcorne PhD Pr ramrne in Health Data Science A rnultidi5ciplinary. entrepreneurial. cross-sector Oi8ital Health community across the North Easi and North Cumbria. multidisciplin3ry. entrepreneurial. uoss-sector Di8ltal Health commuThity acr05S the South West and South Wales. Providing scholarships to OUtsndIng sttsdents completing an Msc in Health Oata Science in partnership with multiple medical charities in order to encourage more students to enter inro Health Data kience fields. Providin8 scholarships to oursranding students completing an Msc in Health Data Science in partnership with multiple medical charities in oréer to encourage more students lo enter into Health Data Science fieltls. A pilot programme looking at way5 to improve how researthers actess the sensitive data they need for searCh and innovation. It aims to help streamline processes and accelerate the assessment of the safety of researchers. while en5urin8 that legal re5 onsibilities are rnet. and sensitive data is kept confidential. To support Health Data Research UK'S capital investments pro8ramme and assets. Newcastle EPSRC Oigilal Health Hub Bristol ESPRC Di8ltal Health Hub Alzheimerfs Researth UK MSC Funding Oiabetes UK Msc Fundin8 Researcher Passports World Class Labs 22123 Capital Block Grant Capital Investment Pro ramme Phase 2 HOR Global Grani To support Health Data Research UK'S capital investrnent programrne To enable the expanston and directsonal lead of The Global Health Network to shift to Global South countries and faciliiate the expansion of a network of data analysis science led by scientists from low- and rniddle-income countries. To enable the expansion of the ICODA workbench for COVIO data ènalysis to low- and middle-income count artners The mission of EOSC-ENTRUST is to create a European network ol t¥ustEd research environments for sensitive data and to drNe European interoperability by joint development of a common blueprint for federèted data access and analysis. To provide a coherent intellectual framework encompassin8 the latest theoretical aévances to create resource5 includin8 practical guideline5 for choice5 about OSOC in a range of tethnical and procedural en¥ironffnts. ICODA & Global Health Network.. Planning Grant EU Horiion ENTRUST Award DARE UK- Driver Projert.. SACRO ISemi-Autornated Checking of Research Outputs) OARE UK- Driver Project.. FX (Delivering a federated network of TRES to enable safe analyticsl DARE UK- Oriver Project.. SATRE (Standardised Architecture for Trust Research Environments) NIHR PRAcfisE (Uni Hosp Brist + Weston NHS Trustl Standing Together Collaboration To develop an exemplar framework and reference implementation for federated analytic querie5. To develop a reference specification lor TRES. infomed by existing open source TRE implementatyons. the TRE community. and patients and the publTrc. PRACTISE AF.. Plètform tRiAJ to improve outcome5 afTer cardlac SurgEry Atrial Fibrillation IAccelerator Award) Patient and Public Involvement and Eneagement contribution towards a collaboration led by University Hospitals Birmingham NHS Foundation Trust.. Building STANdards lor data Diversity, Inclusivity. & Generalisability. Understanding Mechanisms ofThrombosis and Thrombocytopenia in COVID-19 and with SARS-CoV2 Vaccines VI Consortium 43
HEALTH DATA RESEARCH UK NOTES TO THE FINANCIAL STATEMENTS FOR YEAR ENOED 31 MARCH 2024 MRC Population Research To 5UPPOrt the development of Population Resear(h UK. a research initiative that that UK Prograrnme maximises the insights. innovations and research effioency of the UK'S world leading social and biomedical data assets. intludin Lon itudinal Population Studies. To support the development of the Di8ltal Innovation Hub Pro8ramme under the Life Sciences Industrial Strategy To support business development of the Health Data Research Hubs, support the work of the UK Health Data Research Alliance and the UK Health Data Research Innovatton Gatewa To support and accelerate re5earth on COVID-19, sUPPOrtin8 the other five National Core Studie5 into key research questions by enabling stTeamlined. safe and responstble access to relevant datasets relevant for the pandemic. To continue to respond to emerging COVIO-19 research priorities, mappin8 key data 5et5 required by the National Core Studies. NIHR UPH Studies and SAGE sub-groups to allow research which can inform policy and operational decision making across the UK. To further develop the data infra5trutture and services across the UK ro allow faster access to high priority health. administrative. molecular. and behavioural data èssets for researchers workin8 on the most important COVID-related studies. ensuring prioritv research quesiions can be answered efficienily. in a transparent and trustworthy way. To Slren8then and extend the existln8 national Trusted Research Environmenrs (TREI and UK Health Oata Research Innovatson Gateway infrastructure through inclusive four nations approach ensuring the priority datasets for COVID-19 research are lindable. acce55ible. inter-operable and reusable IFAIRI. To scope out the delivery of a naiional federared digital research infrastructure to establish the next generation of secure. flexible and interoperable environments for connecting and analyssng complex and sensitive multi- disti lina data at UK stale. Oigital Innovation Hub Prograrnme Management Digital Innovation Hub Prograrnme.. Phase 3 Data & Connectivity National Core 5tudv= Phase O Data & Connectivity National Core Studv= Phase I DARE- Dara and Analytics Research Environrllents UK 44
HEALTH DATA RESEARCH UK
NOTES TO THE FINANCIAL STATEMENTS
FOR YEAR ENDED 31 MARCH 2024
io.
STATEMENT OF FVNOS Iconiinuedl
STATEMENT OF FVNDS-prigr year
Balahce
Mtr4enwnt fvnd5
Transfers
l April 2022
lrtcome
Ewndiiure
31 Marth 202J
E'o
Unresti¢
HEALTH DATA RESEARCH UK NOTES TO THE FINANCIAL STATEMENTS FOR YEAR ENOED 31 MARCH 2024 11. ANALYSIS OF NET ASSETS BETWEEN FUNDS Analysls of net funds- ClieNt year Unrestricted Funds 2024 strirted Funds 2024 Total Funds 2024 £'ooo Intangible fixed as5et5 Tangible fixed assets Current assets Creditors due within one year 34 167 57.515 12.0191 12 46 167 83.720 14,1961 26.205 12.1771 Total of funds 55.697 24.040 79.737 Analysis of net funds- prior year Unfesirirted Fund5 2023 Restritted Fund5 2023 Total Fund5 2023 Intangible lixed assets Tangible h"¥ed assets Current a5set5 Creditor5 due within one year 50 90 95.367 19.4541 67.029 16.5061 28.338 12.9491 Total of funds 25.389 86.053 12. RECONCILIATIONOF NET MOVEMENTIN FUND5TO NET CASH FLOW FROM OPERATING ACTIVITIES 2024 2023 Nei income for the year las per Statement of Finanaal Activities) 16.3161 54.072 Adjustment for: Depreciation and amortisalion tharges Di5P05a15 Net bank interest Decrease / lincreasel in tlebtors IDecreasel/lncrease in creditors 67 12 1221 I2.)3 15.2581 69 41 154.047 16.S571 Net cash provided by operatin8 adi¥ities 16.4251 46
HEALTH DATA RESEARCH UK NOTES TO THE FINANCIAL STATEMENTS FOR YEAR ENDED 31 MARCH 2024 13. ANALYSIS OF CASH AND CASH EQUIVALENTS 2024 £'o 2023 Cash at bank and in hand ,502 8.146 8.502 .146 14. OPEPATING LEASE COMMITMEl¥fS At 31 March the total of the Companvs future rninimum lease payments under non-cancellable operatin8 leases was.. 2024 1023 £'ty)o Amounts payable- In less than l year In two to five years Total Is. RELATED PARTY TRANSACTIONS In the course of the year 2024. Health Data Research UK received grants of £17,717k12023.. £25,195kl frorn The Medical Re5Earch Council (part of UK Research and Innovationl. £71YJk was owed to Health Data Research UK at 31 March 202412023.. £345kl. UK Research and Innovation IVKRII 15 a founding member of the Company. cer the course of the year the organisation received 8rants 01 £885k 12023.. £795kl and incurred no other expenditure12023.. £153kl in relation to Wellwme Trust. Wellcome Trust provides funding 8rants to the company diiettly for the Health Oata Research UK Turing Wellcome PFIO Programme in Health Data science, through UKRI as a core funder and through the Covid-19 Therapeutic5 Accelerator. Health Data Research UK is also a Tenant of the Wellcome trust Durin8 the year the or8anisabon received grants of £ICXJk12023= £2CthI Irom Swansea University ènd incurred no expenditure12023.. £3.149kl as grants payable and £132k12023.. £341kl as otherexpertditure_ Health Data Research LIK owed £20k as at 31 March 2024. Cathie Sudlow. Chief Scieniist. Deputy Oirettor of Health Data Research UK and Director of the 8HF Data Science Centre. is Chair of the Strategic Advisory Board, DATAMINO at the Swansea University and partners_ er the financial year. Health Data Research UK recer¥ed non-grant income of £15k12023.. nill and incurred no expenditure12023.. £1.156kl a5 grants payable towards lrnperial Colle8e London. Mark Walport. a member of the trustee boaré. is Honorary Distinguished Professor ol Medicine at Imperial College, London, and Chair of the lrnperi31 College Academic Health Sciences Centre Partnership Board. During the year the or8anisation incurred £21k12023-. £3kl as grants payable towards Manchester University NHS Trust. £1Sk was owed at 31 March 2024. William 8oa. a member of the trustee board. is Sirategic Finantial Advisor to the Manchester Uni¥er5ity NHSTru5t. Throughout the year the organisation incurred no grant payable expenditure 12023.. £1,284kl to the Scottish government. Andrew Morris. Direttor of Health Data Research UK. is Chair of The kottish Government COVIO-19 CMO advisory Group and Chair of the Scottish Government Stsnding Committee on Pandemics. During the year the organisation incurred expenditure of £477k12023.. £3,148kl as grants pèyable artd £116k as other expenditure to the University of Edinburgh. Health Dats Research UK owed £311k12023.. £105kl at 31 March 47
HEALTH DATA RESEARCH UK NOTES TO THE FINANCIAL STATEMENTS FOR YEAR ENDED 31 MARCH 2024 2024. Andrew Morris, the Director of Health Data Research UK, is Vice Principal and Professor of Medicine at the University ol Edinburgh. Graham Spittle. Chair of the 8oartl of Trustees until July 2023. 15 Dean of Innovation at the UnNer5ity ol Edinburgh. During the year the or8anisation incurred expenditure of £245k towards NHS England. Mark WalporL a member ol the trustee board. is a non-executive director of NHS En8land. During the year, the organisation inturred zero expenditure 12023. £7801 io Thrive Worldwide UK Ltd. Alison Hopkinson. fomer Chief Operatin8 Officer and Direttor of Delivery (in post until April 20231. is the spouse of the Director and Shareholder Thrive Worldwide UK Ltd. During the year. Dr Graham Spithe. a Trustee. was paid £5k12023-. £16kl for hi5 Servi a5 Chair. Durin8 the year. trvstees were reimbursed expenses amounting to £2k12022". £lkl. 16. COMPARATIVE STATEMENT OF FINANCIAi ACTIVITIES INCIUDING INCOME AND EXPENDITURE ACCOUNT- Prior Year Unrtstrirted Funds Restrirted Funds Total 2023 £'ooo Income from: Donatiofts Investment5 Other income 58.327 27.292 85.619 Toial Income 58.828 27.295 85.623 Ejtpenditvre on: Charitable activities Research 17.6SI 13.899 31,550 Total Expenditure 17.651 13.899 31.550 frjet incornellexpenditurel bth>re transfefs 40.677 13.396 54.073 Transfefs beTh¥een FUd5 li 1131 13 Net movement in lunds 13,409 54,073 Reconciliation of funds Total lunds brought forward 20,OLKI 11.980 31.980 Total funds carried forward 60.664 25.389 86.053 48