May 21, 2024

expert reaction to the National Data Trust report

Scientists react to the Tony Blair Institute National Data Trust Report.

Dr Julia Wilson, Director of Strategy at the Wellcome Sanger Institute, said:

“We welcome the proposal of the National Data Trust to enable the NHS to safely share anonymised patient data with trusted researchers. Access to representative health data is key to realising the benefits that AI, machine learning and innovation can deliver for accelerating discoveries and drug development.

“Large-scale datasets are the critical foundation of discovery, from providing diagnoses for children with rare developmental disorders, to finding new personalised treatments for autoimmune diseases and cancer. To make the Data Trust a success, it requires a baseline of trust and responsible data sharing, plus solutions to technical challenges such as interoperability, so that these data are accessible to all researchers.”

Professor Rhian Gabe, Professor of Biostatistics and Clinical Trials, Queen Mary University of London, said:

“This would be a huge boost to Academic Researchers, expanding their ability to provide evidence on the benefit of health interventions in a more efficient and timely manner.”

 New Comment; Dr Andrew Garrett, President, Royal Statistical Society, said:

“The Royal Statistical Society welcomes the TBI report with its bold and ambitious recommendations. The RSS (RSS, 2023) has previously recommended a review of the UK’s health and social care data landscape and has argued that this should cover the systems and organisational structures for gathering and publishing health and demographic data, the levels of investment, the joining up data across nations and organisations, and the alignment of the infrastructure with the data analysis.  The TBI report is aligned with this recommendation that was made to the Covid-19 inquiry.

The RSS has long argued that data should be regarded as a critical part of the UK’s infrastructure.  This means making sure that relevant datasets are collected, linked securely, analysed, and shared as appropriate with trusted parties.  The National Data Trust model proposed in the TBI report to streamline access to, and the curation of, the UK’s health data assets, is consistent with the RSS’s proposal to develop Trusted Research Environments as an effective and agile process for securely sharing government and NHS data with researchers.  The RSS has proposed that personal identification numbers are used more widely across the UK to improve research record linkage – building on the success of Community Health Index (CHI) numbers in Scotland.

The RSS has consistently called for improved data sharing – both within government and in terms of improved access to data.  The recommendation to amend legislation on data controllership within the NHS is important as it would establish a legal gateway to access health data – something that currently exists for other government data through the digital economy act (2017).  This would be an important step given the sensitivity around health data access.  Temporary agreements established during the pandemic demonstrated the positive impact of tracking an individual’s interactions with health services while protecting their personal and identifying information.

The report references the Covid-19 RECOVERY trial and is important that encouragement is given in the UK to embed an experimental framework within the healthcare system and to give individuals in the UK wider access to the potential benefits of participating in clinical trials.  For example, during the pandemic there were missed opportunities to use cluster randomisation and stepped-wedge designs to roll-out vaccines to care homes that would have provided stronger evidence in relation to vaccine effectiveness and safety. Similarly, for teachers and schools.”

Professor Elena Simperl, Professor of Computer Science at King’s College London, said:

“Private investment in new medical discovery is already happening and there is broad agreement on the value of NHS data. As such, the need to include private stakeholders in the data trust, or to create a commercial rather than a non-for-profit entity does not easily stand scrutiny, especially as the NHS and its data should first and foremost serve patients and public-interest research rather than other priorities. Setting this aside, a data trust, or any other institutional form of data sharing would not directly solve the problems the proposal identifies: fragmentation, and, as a result, under-utilisation.

Fragmentation is reduced by following common interoperable standards, including vocabularies to describe what data values mean and consistent ways to access the data by those who are supposed to access it. This requires a collaborative, inclusive approach, following best practices from other sectors like open banking. This standardisation effort should build directly on top of existing efforts to NHS data sharing rather than adding a new layer of complexity.

Many of the funding issues raised in the paper would not be solved by a national data trust, while selling the data would come at an extremely high cost, including potential erosion of public trust. Without public buy-in, as shown by other well-intentioned initiatives in the past, there is a risk that patients would opt out of sharing their data, diminishing the value of the data in the long-run and the financial viability of the new data institution.”

Professor Sir Rory Collins, Principal Investigator and Chief Executive of UK Biobank, said:

“The report’s broad aim of unlocking NHS data to support health research is to be admired, but there is a simpler solution. Scotland and Wales have already centralised much of their health data within the NHS. In England, we need to do the same (including, in particular, primary care data) so that the whole of the UK is covered. As we saw during the pandemic, NHS England already has the necessary secure systems, processes and skills to enable important health research. What they don’t have is secure long-term funding to make it a priority, or retain the teams who can support the process. 

“Long-term funding for research matters, as consented cohort studies like UK Biobank show. Providing NHS England with sufficient long-term funding would not only enable research into ways to improve public health and patient care, but it would also help the NHS to deliver healthcare better.” 

Prof Dame Til Wykes, Head of the School of Mental Health and Psychological Sciences (MHaPS), Institute of Psychiatry, Psychology and Neuroscience, King’s College London, said:

“Data sharing is essential for innovation, but we must be sure it is accepted by patients. Some, especially those with a mental health problem, may be sceptical about how their data will be shared and the security of the systems. One way of building trust is to include patients in oversight of the sharing systems and to ensure that any innovation is shared with the NHS for the benefit of those patients. This is possible as shown by the South London and Maudsley and the NIHR Biomedical Research Centre who involved patients in the end to end design of the Clinical Records Interactive Search System. These more localised systems may lessen any concerns.”

Prof Gilean McVean, co-founder and President of Genomics plc, and Professor of Statistical Genetics at the University of Oxford, said:

“The UK has consistently been a world leader in establishing population-scale biomedical research studies, such as UK Biobank, Genomics England and Our Future Health, but has consistently failed to link such initiatives together, leaving a fragmented and frustrating ecosystem. This is not the first proposal I’ve seen that aims to solve the challenges, but the National Data Trust has an ambition and breadth, particularly in uniting long-term public and private funding, that could bring genuine authority, coherence and sustainability.”

Nicola Perrin, CEO of the Association of Medical Research Charities (AMRC) said:

“Harnessing the power of patient data to transform care and research is essential.  Much more needs to be done, urgently, to improve access to high-quality, linked datasets to enable research and innovation. There is also an important opportunity to leverage the value of NHS data, and to ensure that the NHS and patients benefit from that value. 

Today’s report from the Tony Blair Institute is the starting point for a debate about how best to achieve this. It will, rightly, spark discussion about the proposed business model, whether a public-private partnership is the right approach, and questions about the feasibility and practical aspects of implementation.

But any new model will only work if the public, patients and healthcare professionals have confidence in the solution. The next stage of the discussion must therefore include these groups as key partners in co-producing the design and informing governance arrangements. There are a range of different options and models that should be explored. By engaging openly and transparently, there is an opportunity to design a bold solution for the benefit of patients and the NHS.”

Professor Andrew Morris, Director of Health Data Research UK, says:

“We stand on the brink of a new era in healthcare, harnessing the power of AI and the UK’s health data will undoubtedly transform healthcare, reinvigorate our economy and importantly, save lives.

“The UK’s health data holds enormous value. The best performing health systems internationally harness health data to transform and improve the quality of healthcare, to power research and innovation, and to support public health and efficient running of health services. The ‘National Data Trust’ proposed for England by the Tony Blair Institute aims to solve challenges that many of us in health data research recognise all too well. Other models and structures are also possible, and I welcome the debate it will definitely generate.

“Building on existing successes like the NHS Secure Data Environments Network, OpenSAFELY and our own work at Health Data Research UK will be key. We have seen remarkable progress in the last four years in the use of health data for research – we are now able to run studies on 67 million people in the UK to answer important societal questions.

“Whichever direction we go, public support is absolutely vital. Industry access to patient data tends to be where surveys suggest the public have more doubts. Yet it is through life science companies that we will see most clinical trials of new treatments and the potential of AI for health realised, enabling economic benefits to flow back to the health service. We therefore need a new social contract to enable this in a trustworthy way.

“Ownership, oversight and openness are going to be the points to get right. We need clarity on who benefits and how, if public trust is to be earned and retained.

“It’s great that attention is being focused on this issue. If this proposal results in a renewed public discourse on the best way to take things forward, it would be a very positive step. Today’s research is tomorrow’s care. It is essential we get this right.”

Professor Peter Bannister, Policy Chair and Healthcare spokesperson at the Institution of Engineering and Technology (IET), and Managing Director of Romilly Life Sciences, said:

“A future health system which promotes preventative treatment and quality of life, is highly dependent on the need for us to build data-enabled solutions, such as AI. This will help to detect diseases earlier, more effectively and more cheaply, and increase levels of automation to serve our growing population.  

“A credible commercial model to deliver this is welcome, but it needs to sit alongside more cautious timelines as per the NHS Transformation Directorate’s latest “Data Saves Lives” public consultation timetable. A huge amount of work is also needed to transform NHS data to ensure it’s consistent and useable to those developing new methods of diagnosis and treatment delivery – so that the full patient journey can be understood to enable early treatment. Currently this is known as “curation” and entails manually linking hospital records – many of which still exist only in paper form – with patient data that is collected in community settings. 

“A skilled technical and clinical workforce who can carry out this data linkage and prioritise the overhaul of the current NHS procurement system will also be required, so that concepts such as cloud-based “personal health accounts”, can be delivered by those most qualified to do so. Utilising small innovative UK companies for this work, will help to make the vision of future healthcare a reality.”

Emma Lagerstedt, Policy and Engagement Manager, Understanding Patient Data, said:

“The National Data Trust report published by the Tony Blair Institute is an interesting proposal which touches on important considerations for creating a system that fosters innovation whilst retaining the confidence of members of the public and healthcare professionals.

We welcome the overarching ambition of the report to realise the potential of de-identified patient data to deliver innovative life sciences research to improve treatment options and patient outcomes. However, it is critical that trust, transparency and public benefit remain at the heart of decisions around data, and the proposed governance and data access requirements for the NDT need to reflect this.

It remains to be seen how the proposals outlined could work in practice, and there are a number of areas where more clarity is needed.

For instance, the governance structure of the proposed NDT is not yet clear. The report states that the governance structure and process ‘will need to balance the public interest with that of investors and other key stakeholders’. Whilst members of the public are generally supportive of sharing their data with commercial organisations for research, it is clear from research that public benefit is the primary driver of acceptability and public interest needs to remain at the heart of all decisions about governance arrangements.

The report appears to propose an access model that does not distinguish between different third-party organisation types, and does not outline what the fee model will look like. More clarity is needed on this point, as are assurances that the proposed access model does not present a barrier for charity researchers, academia or smaller organisations.

The mention of lack of joint controllership between NHS England and individual data controllers (e.g. GPs) under a section headlined ‘Legal and Policy Changes Required’ also suggests a desire to move towards joint data controllership, which would require extensive engagement with the profession.

Research from Understanding Patient Data and the Ada Lovelace Institute shows that three quarters of people believe that members of the public should be involved in decisions about how NHS data is used. Any proposals to change the health data access model should therefore be tested with the public and healthcare professionals through extensive, meaningful engagement.”

‘A New National Purpose: Driving Health and Wealth Creation with a UK Data Trust’ was published by the Tony Blair Institute at 00:01 UK time on Tuesday 21st May. 

Declared interests

Professor Peter Bannister: Honorary Professor at the University of Birmingham and Non-exec director at the Life Sciences Hub Wales.

Professor Andrew Morris: Andrew Morris is Director of Health Data Research UK, the national institute for health data science; is Professor of Medicine and Vice Principal at the University of Edinburgh; is President of the Academy of Medical Sciences, has minority (<1.5%) shareholding in Aridhia Informatics and a small number of shares in GSK (<£5,000).

Prof Gilean McVean: GM is Founder and director of, and shareholder in Genomics plc. He is a partner in Peptide Groove LLP.

Prof Sir Rory Collins: “I am CEO and PI of UK Biobank, which is a Charitable Company established as a Joint Venture by the MRC and Wellcome. I have been in that role since September 2005, seconded 60%FTE from the University of Oxford where I am Head of the Nuffield Department of Population Health (which, along with other research organisations globally, benefits from using the UK Biobank – without any preferential access – for health-related research that is in the public interest).”

Andrew Garratt: I am a member of the UK Statistics Authority’s Research Accreditation Panel that provides oversight and accreditation of research projects, researchers, and processing environments under the Digital Economy Act 2017 ensuring that the process for granting access to de-identified data to accredited researchers is independent, consistent, and transparent.

I am employed by ICON which is a Contract Research Organization.  ICON provides pharmaceutical services to the pharmaceutical and biotechnology industries. ICON conducts clinical trials on behalf of Sponsors.

For all other experts, no reply to our request for DOIs was received.