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Scientists comment on the new Health Data Research Service, funded by the UK Government and the Wellcome Trust.
Professor Sheila Bird, Programme Leader Emerita at MRC Biostatistics Unit, University of Cambridge, said:
“In 18 months from now, the newly-announced Health Data Research Service promises access to data for medical research into one secure and easy-to-use location, meaning a researcher doesn’t have to navigate different systems or make multiple applications for information for the same project. Does selected cross-departmental support in England mean that Ministry of Justice and Home Office might also welcome this initiative and facilitate medical research at the interface of public health and criminal justice?
“More importantly, is legislation already planned for 2025 to end the late registration of fact-of-death in England, Wales and Northern Ireland for coroner-referred and inquest deaths? One in five premature deaths in England and Wales (aged 5-44 years) is not registered for at least 6 months. By contrast, in Scotland, all deaths have fact-of-death registered within 8 days of death having been ascertained.
“Since swine-flu, the Royal Statistical Society has called for prompt registration of all deaths throughout the UK.
“The Health Data Research Service will be holed unless this outrageous registration-gap is closed before the end of 2026. I appeal to the Prime Minister, Health Secretary, Lord Chancellor, Home Secretary and their chief scientific advisors to act now and heed the scientific case made by the Royal Statistical Society, National Statistician, Chief Medical Officer, Chief Coroner (I hope) and Editors of medical journals such as The Lancet’s Professor Richard Horton.”
Prof Sir John Hardy, Group Leader at the UK Dementia Research Institute at UCL, said:
“As a companion to this announcement, it is to be hoped that there will be a corresponding increase of funding to those UK groups who wish to analyse these data, as well as work to help them overcome the red tape necessary for this access.”
Lawrence Tallon, Chief Executive, MHRA, said:
“Today’s government announcement will accelerate the discovery of life saving drugs, improve patient care and make Britain the best place in the world for medical research.
“We welcome investment in data services which are critically important to support the development of, and early access to, new medical products and a robust and comprehensive safety surveillance system.
“We are committed to creating a flexible and risk-proportionate regulatory approach for clinical trials, which accelerates patient access to potentially life-saving medicines without compromising safety. We are in the process of introducing new clinical trials regulations to create a faster, more efficient, accessible and innovative clinical research system – making the UK a world leader in clinical trials.”
Pro Amitava Banerjee, Professor of Clinical Data Science and Honorary Consultant Cardiologist, Institute of Health Informatics, University College London, said:
“One of the biggest advances during the COVID-19 pandemic was making the whole population’s data available for research for the first time. This allowed researchers to answer the most pressing scientific questions to improve health, and to prevent and treat disease. This was world-leading and continues to lead to many time-critical scientific insights by the UK’s health research community.
“As a researcher and as a clinician, data availability has allowed me to look at diseases at scale, from the most common to the most rare, across many risk factors and across many different subgroups, which was previously not possible. The new money and new infrastructure shows acknowledgement that “Data Saves Lives” and a real commitment to this principle. It will allow major scale-up of these data-driven research efforts, meaning that we can be more representative of the population we serve; more generalisable to different population subgroups whether by age, sex or ethnicity, and more applicable to the health needs of the population.
“Clinical trials may benefit in several ways, including greater efficiency by recruiting and following up patients in routine electronic health records, and also improved trial design so that drugs and interventions are more likely to be effective.”
Professor Sir Rory Collins, Principal Investigator and Chief Executive of UK Biobank says:
“The newly announced Health Data Research Service has been needed for a long time and has the potential to be truly transformational. There is no question that NHS data can rapidly speed up research into diseases that impact our aging population, including cancer, dementia and depression.
“UK Biobank has already demonstrated the power of joining up long-term data by producing 15,000 scientific papers, but filling in the gaps using NHS data will allow researchers to carry out analyses that were not previously possible. The Government have already outlined their support for linking GP data to consented cohorts like UK Biobank, as doing so will add a richness to the data, unlocking unprecedented insights into the causes of disease. The new Health Data Research Service has the potential to greatly add to that.”
Steve Bates, CEO of the UK Bioindustry Association, said:
“The Prime Minister’s announcement of a national health data research service is welcome news for the UK life science sector. We have a wealth of small innovative companies in the UK, working in an ecosystem, that are developing solutions to help us prevent, detect and treat disease better than before. By improving the data access landscape for these companies they can bring benefits to NHS patients, and create jobs to grow our economy faster. Matching the benefits of the UK’s health data with the entrepreneurial elan of our best small companies maximises the growth of health and wealth across our nation.”
See our recent report here for case studies: https://www.bioindustry.org/static/c480cb05-a1bb-4305-987f13816fbe349b/Genomics-nation-2023.pdf
Dr Raghib Ali, Chief Executive and Chief Medical Officer of Our Future Health, said:
“This is great news and takes us one step further forward towards a revolution in data and life sciences research.
“The Health Data Research Service gives us a once-in-a-generation opportunity to transform health research in the UK. Data-powered research is our best bet to improve the health and wellbeing of the population, increase the productivity of the workforce, reduce inequalities and get more people living longer, healthier lives.
“This commitment today from the government and Wellcome will allow us to make the most of advances in science and tech to offer new insights into the causes of disease, helping to transform our current model of healthcare from treatment of late stage diseases to one of prediction and prevention.”
Prof Sir Martin Landray, Professor of Medicine & Epidemiology, University of Oxford, Co-Lead of the RECOVERY trial and Chief Executive Officer, Protas, said:
“Having set up NHS DigiTrials in 2019 and seen the impact this has had on clinical trials such as RECOVERY and NHS Galleri, it is great to see such significant investment in making health data available for research. Timely, trustworthy access to connected data is key to the development and evaluation of new ways to detect, prevent, treat and manage health conditions that impact on millions of individuals.
“The emphasis on clinical trials is particularly welcome.
“During the pandemic, we saw how clinical trials could distinguish between treatments that we hope might work and those that we know actually do so. In the RECOVERY trial alone, we were able to identify treatments that went on to save hundreds of thousands of lives. But the current clinical trial system is too slow, too expensive and too burdensome for participants.
“The UK has all the attributes needed to deliver large, conclusive trials of new treatments for major health challenges ranging from cardiovascular disease and diabetes to common infections and mental health conditions. I hope that this announcement will spur on initiatives to reduce unnecessary delays and bureaucracy in the way trials are regulated and governed, increase partnership between the NHS, the biopharmaceutical industry and the not-for-profit sector, and deliver trials that are more readily accessible to patients and the public.
“Just as for NHS care, it is time to move clinical trials from treatment to prevention, analogue to digital, and hospital to community.”
Understanding Patient Data, said:
“We welcome today’s announcement of a new health data research service, jointly funded by Wellcome and the UK government.
“The Health Data Research Service aims to create a secure single access point for existing datasets, streamlining the process for researchers and potentially speeding up life-saving medical breakthroughs.
“This is a valuable step towards implementing the Sudlow review recommendations and making better use of existing health data to support research, innovation, and improved health outcomes.
“At Understanding Patient Data, we’ve consistently seen that people are supportive of their data being used for public benefit — when there are clear safeguards in place, transparency about how decisions are made, and visible patient and public involvement in decision-making. The governance arrangements put in place for the health research service need to meet these expectations to ensure that public trust is earned and maintained.
“In light of ongoing financial pressures and substantial change to how the NHS is managed, continued investment in public engagement is more critical than ever. The health data research service has the opportunity to build strong foundations from the start: transparent governance, clear accountability, and a commitment to delivering measurable public benefit.”
Janet Valentine, Executive Director Innovation and Research Policy, ABPI said:
“The scale and ambition of the Prime Minister’s announcement today shows he understands the huge opportunity for the UK to be a global leader in clinical research, and that unlocking research access to health data and speeding up the set-up of clinical trials are fundamental to achieving that goal.
“Public and patient confidence in the responsible use of health data will be critical to the success of the service, which is why the government is right to work closely with a trusted partner like the Wellcome Trust.
“To make the most of this opportunity, it will be essential to build on the existing strengths and expertise within the UK health data system. It will also be vital that the pharmaceutical industry, as a major investor in research and development of innovative medicines, plays an integral role in the design and implementation of the new health data research service.”
Government press release – Prime Minister turbocharges medical research: https://www.gov.uk/government/news/prime-minister-turbocharges-medical-research#:~:text=The%20Prime%20Minister%20has%20today,new%20Health%20Data%20Research%20Service
Wellcome Explainer: https://wellcome.org/news/national-data-service-will-simplify-access-health-data-research
Declared interests
Professor Sheila Bird: “SMB leads for RSS on the need for legislation to end late registration of fact-of-death in E&W and Northern Ireland.”
The nature of this story means everyone quoted above could be perceived to have a stake in it. As such, they are implicit in each person’s affiliation.