NHS data: Maximising its impact on the health and wealth of the United Kingdom Saira Ghafur, Gianluca Fontana, Jack Halligan James O’Shaughnessy & Ara Darzi Contents
02 ACKNOWLEDGEMENTS
04 FOREWORD
05 EXECUTIVE SUMMARY
08 INTRODUCTION: MAXIMISING THE IMPACT OF NHS DATA
12 PUBLIC OPINION AND ENGAGEMENT
16 DATA GOVERNANCE AND LEGAL FRAMEWORKS
20 DATA QUALITY AND INFRASTRUCTURE
24 CAPABILITIES
26 INVESTMENT SUGGESTED CITATION Ghafur S, Fontana G, Halligan J, O’Shaughnessy J, Darzi A. NHS data: Maximising its impact 28 VALUE SHARING on the health and wealth of the United Kingdom. Imperial College London (2020) doi: 10.25561/76409 34 REFERENCES Acknowledgements
We would like to thank the following people who contributed to this document through interviews/ attendance at a round table and have agreed to be acknowledged:
NAME ORGANISATION Dr. Natalie Banner * Understanding Patient Data Professor Sir John Bell * The Academy of Medical Sciences Kate Cheema British Heart Foundation Professor Diane Coyle University of Cambridge Douglas de Jager * Human.ai Rachel Dunscombe * NHS Digital Academy Dr. Andrew Elder Albion Capital Lord Valerian Freyberg * House of Lords John Godfrey * Legal & General Joanne Hackett * Genomics England Dr. Hugh Harvey * Hardian Health Eleonora Harwich * Reform A total of 26 one-to-one interviews were held with individuals with a strong Geoff Heyes Mind interest in this topic. Interviewees included representatives from government, Dr. Dominic King Google Health the NHS, academia, industry (technology and life sciences), research Dr. Jack Kreindler * Centre for Health & Human Performance institutions, charities and data privacy organisations. We have not consulted the public or healthcare professionals for the purposes of this paper, as we Michael MacDonnell * Google Health chose to focus on experts in the data policy and governance space. Part of the Dr. Mahiben Maruthappu * CeraCare rationale of the paper is to understand which issues should be explored with Lord Parry Mitchell * House of Lords the public and how to do so. Chris Molloy * Medicines Discovery Catapult In addition to the interviews, a half-day workshop was held with the same Professor Andrew Morris * Health Data Research UK (HDRUK) individuals to share insights from the interviews and to explore each topic in Parker Moss Cancer Research Technology group discussion (the people marked with * above attended the workshop). Questions covered during the interviews and the workshop included the Annemarie Naylor * Future Care Capital following (as the main headings): Dr. Jean Nehme * Touch Surgery Andrew Richards * Entrepreneur and investor • What are the key domains of action that the UK needs to take to maximise the value of its health data, whether that is for better Sam Smith medConfidential individual direct care, better healthcare delivery in the NHS, or University College Hospital London Dr. Harpreet Sood * better R&D? and Health Education England • How would you begin to value the potential of NHS data? Martin Tisné Luminate Lydia Torne * Simmons & Simmons • What investment is needed at national level? How do we realise the potential of this investment? Rakesh Uppal * Barts Life Sciences Hakim Yadi * Closed Loop Medicine • What needs to be done to ensure public trust? • What regulatory frameworks are required (e.g., legal, compliance, We would also like to thank Vernon Bainton for the valuable comments he provided. security)?
2 BACK TO CONTENTS 3 Foreword
The UK is the best placed large economy in We hope that this paper acts as a catalyst the world to use its health data assets for and framework for a much-needed national transformative health, scientific and economic conversation on how the UK’s health data can impact. Good progress is being made and all be best used to improve the health and wealth levels of society – including the Government, of the entire nation. Following on from this, we the NHS, academia, charities and industry – are need to generate additional evidence through a committed to this agenda. However, there is a series of work programmes involving academics, risk that this is being done in a piecemeal way. policy makers, industry, NHS leaders and most No single organisation is unequivocally tasked of all the public. The Institute of Global Health with leading the way, and the endeavour has Innovation intends to actively contribute to lacked a comprehensive strategy. these efforts in the years ahead. These insights will enable the UK to make the most of its Our vision is to provide the public with better, advantages, with concomitant benefits for more efficient care, driven by responsible patients, the NHS, the R&D community and the innovation that is underpinned by the UK’s innovation economy. We hope that this work extensive health data. Our goal in creating this will not only resonate in the UK, but also help paper, therefore, is to fill that gap by proposing a governments and health systems internationally single overarching framework to guide the proper to implement strategies to maximise the benefits use of the UK’s health data assets. We have tried of health data for their citizens. to answer some of the essential questions this Executive summary enterprise poses but acknowledge that there are We would like to thank the many outstanding many questions that need further research and contributors who have given their time and inquiry. Our main message is this: the goal of any energy so generously to this work. We look The NHS occupies a special place in the psyche community, offers the best hope of turning the strategy must be to deliver benefits to people forward to their continued contribution as we of the British nation. It is one of our most tide on the rising cost of healthcare. Further, in the UK, and specifically to the NHS. Benefits move forward. treasured institutions, and while trust in other there will be a premium for the country that to other parties will come as a corollary and are parts of the national infrastructure has fallen, cements its position at the head of the pack. important considerations for the strategy. the public still overwhelmingly believes in the purpose and benefits of our health service. The Government is well aware of the scale To achieve the greatest benefit for British Among its many strengths is the NHS’s ability and urgency of the opportunity, and in the last citizens and patients, it is essential to adhere to bring together a comprehensive, longitudinal 15 years it has undertaken some important to three main principles: dataset for 65 million people in the UK. In a initiatives to improve the breadth, depth and quality of the UK’s health data assets. These Lord Ara Darzi world where big data has increasing value, the 1. Patients must feel a sense of agency include the creation of the UK Biobank and Co-Director UK has an opportunity to leverage its health and control over what happens to their data; Institute of Global Health Innovation data assets to benefit people in the UK and multiple disease registries, especially in the field of cancer care, and the Global Digital 2. Health data must always be used in a way Imperial College London across the world – both through better health Exemplars programme in hospitals. The key that is safe, secure, legal and ethical; and and through the generation of more research and development and economic growth. ambition is to keep the UK at the forefront of 3. There must be a concerted effort to fairly world class research. distribute benefits to people across the UK. Ensuring that we maximise the benefits of this opportunity is non-negotiable. The UK, like most To take advantage of this increasingly rich data We believe these are the sine qua non of a developed nations, faces significant long-term environment, a number of organisations – successful UK health data strategy. Get it challenges in healthcare, both from an ageing including NHS Digital, HDR-UK and Genomics right, and we can generate enormous value for Lord James O’Shaughnessy population – the number of people aged 85 or England– have been created to both improve patients, clinicians, taxpayers and the economy. Visiting Professor older in the UK will double in the next ten years curation and provide greater access to data for Institute of Global Health Innovation Get it wrong, and the public will withdraw their – and the growing cost of new kinds of precision research purposes. The current Secretary of Imperial College London support. By following our proposals, the NHS medicine. Using health data to improve the State for Health and Social Care has created a can remain the most trusted institution in the UK quality and efficiency of care delivery, and new body, NHSX, to provide the overall strategic while maximising the extraordinary potential give new therapeutic insights to the research direction for efforts to digitise healthcare, with of its data assets.
4 BACK TO CONTENTS 5 concomitant benefits for the UK’s health data Centre of Expertise to focus on this topic and is are acceptable or not. This is sure to require data” includes and an open debate on specific assets. Further, organisations such as the developing a full programme of work for 2020. an investment in the tens of millions over the uses of health data, the kinds of organisations Academic Health Sciences Networks (AHSNs) This organisation should have a mandate to coming years. with which the NHS should collaborate, and the and the Accelerate Access Collaborative create the conditions to deliver the vision, such role each should play. It should also include (AAC) aim to drive the adoption and spread of as appropriate levels of government investment Finally, to maximise the potential of NHS data the principles that organisations should adhere products, services and businesses that can and clarity on challenges regarding data assets to improve the health and wealth of to around transparency, accountability and improve care within the NHS and elsewhere. protection and patient confidentiality. the nation, the Government needs to make a fairness in data use. This paper puts forward a These efforts, and related initiatives in Northern substantial upfront investment, many multiples value-sharing framework that lays out a number Ireland, Scotland and Wales, combine to enable It is equally important to make sure that the greater than what we currently see and of arrangements the NHS can explore and an ecosystem in the UK that promotes the governance of the UK’s health data policy estimated to be billions of pounds. As a starting the risks and benefits of each. This includes development of solutions and technologies properly reflects the views of patients, their point, all health data must be digitised. Data arrangements such as revenue- and equity- within the NHS and in close collaboration with families and NHS staff. Efforts to involve the quality must improve dramatically and so must sharing, or one-off payments for data licenses partners from academia, life sciences and the public in the conversation regarding what be refined or “curated” at scale to maximise the (where appropriate). technology industry. constitutes acceptable uses of their health data benefits for people in the UK. This requires a have been piecemeal. This lack of transparency huge amount of investment to enable machine- The purpose of this document is to create It is important, however, to be realistic about fuels suspicion of the NHS – one of the most readable data to be collected at source; a first step towards establishing a vison, the challenges that remain. The NHS is the most trusted institutions in the UK – and damages provide technological infrastructure required strategic framework and underlying principles trusted organisation in the UK when it comes to public trust. Certain aspects of how health data for storage, manipulation and linking, ensure to underpin how health data should be used looking after confidential personal information; can be processed remain in a legal “grey area”, mainstream medical staff are appropriately to improve patient care. We need to agree: yet a previous attempt to corral the UK’s health particularly with regard to secondary uses of skilled; and attract and retain the necessary the areas of action needed to maximise the data for research purposes through the Care. health data (the use of data beyond the reason data science and engineering capability. On its value of NHS data; the current situation and Data programme experienced significant it was originally collected, such as secondary own, this investment should more than deliver a existing barriers for each of these areas; problems and had to be curtailed. Furthermore, research). The NHS also lacks the capacity – for return for the UK population in terms of clinical recommendations to explore further; and the salience of data issues among the general example, data scientists and engineers, clinical benefit and improved service delivery. There outstanding questions that should be resolved public is rising, as is scepticism about the use informatics experts – to combine, clean and is a significant question about who should using evidence-based research. Answering of such data by private sector organisations. package data at scale to the point where it is provide this investment. The case for public these questions will be the focus of the next Proving that NHS and other health data are useful and of most value. funding is strong, but there may also be a role stage of our work. being used to benefit the wider public is for the “right” kind of private money targeted critical to retaining trust in this endeavour. We need a national conversation with at specific projects that require additional locally delivered engagement involving all financial support; this needs to be explored There remains some confusion about who is stakeholders to address these issues, as further. responsible for overseeing the UK’s emerging this topic is too important to solely involve health data strategy. Any strategy must not senior government and NHS leaders. First and An additional consequence of this investment only cover separate NHSs in each of the four most critically, we must seek input from both will be a dataset that is more attractive for home nations, but also include a number of the public and from clinicians – as trusted academia and the life sciences and technology organisations – some of which are listed above guardians – regarding what they believe to industries to license and use, facilitating the – that are involved in setting policy. There also be acceptable uses of health data, and this creation of technologies that will directly benefit remains confusion around which organisation must be done on an ongoing basis. This people in the UK. The resulting economic growth is ultimately responsible for developing public involvement should build on excellent and job creation is likely to generate billions of and delivering the vision for maximising the local efforts such as the “citizen juries” by pounds for the UK economy. It is imperative that potential value of NHS data for people in the Connected Health Cities and Understanding we create the right mechanisms for technology UK. Important first steps and shared learning Patient Data and the engagement efforts of the and science to thrive, and equally important have been made by the UK Health Data HDR UK Public Advisory Board and OneLondon to make sure that the NHS realises fair value Research Alliance, but this remains a major programme. These should be combined with from the data or capability that is contributed. challenge. It needs to involve senior decision- a national communications strategy regarding We must also make sure that the benefits are makers across government and especially the use of health data in partnership with the shared across the UK, and not simply in those the NHS, united behind an official narrative Association of Medical Research Charities areas that are already doing well. that all stakeholders – including the public, (AMRC). We must be much more transparent clinicians, the NHS, government, academia, about current uses. We need a dialogue to In doing so, it is essential to engage with the charities, and the life sciences and technology ensure people’s views and concerns are public on a continual basis to understand what industries – can support. In an encouraging reflected in decisions about which uses of data, arrangements are acceptable to them. This sign, NHSX has committed to develop a National and benefits generated form these, should include an explanation of what “health
6 BACK TO CONTENTS 7 bringing together 22 research institutes problem with intangible assets. While valuation Introduction: Maximising across the UK, which has in turn funded methodologies exist and have been recently seven Digital Innovation Hubs, through used by the Government,6 their applicability to the impact of the UK’s health data the Industrial Strategy Challenge Fund the NHS context needs further development. (ISCF), to enable a UK-wide life sciences ecosystem that provides responsible and While progress has been made, the UK still safe access to health data, technology and lacks a clear strategy to maximise the impact OPPORTUNITY payer system under a common legal framework, science, research and innovation services. of health data. Such a strategy will need to be could create a single longitudinal dataset for a underpinned by a clear framework that robustly While the NHS is considered one of the best • Genomics England has been allocated large and diverse population. In addition, other addresses questions of privacy, ethics, security health systems in the world, there is still more than £250 million for the introduction and what value is provided to the NHS in the 1 complementary strengths include: room for improvement in UK health outcomes. of whole genome sequencing in the NHS, sharing of these data. Achieving a step-change in the nation’s health • A health service that is the most trusted including towards projects such as the outcomes requires a broad range of measures institution in the UK; 100,000 Genomes Project that enables Public involvement in the use of their health including, but not limited to, more spending. research into treatments for rare diseases data has been piecemeal and inconsistent, and One of the opportunities open to the NHS is to • A strong record of innovation in health and common cancers.5 past efforts have attracted criticism. Both the use data-driven solutions and technologies to and life sciences and a vibrant technology NHS Connecting for Health Agency (responsible improve direct care, make the delivery of care industry; • UK Biobank, established by the for delivering the National Programme for IT) more efficient and promote the development Wellcome Trust and partially funded by and Care.Data received widespread criticism for • World leading research universities and of new therapies. the Government, aims to improve the issues such as a lack of clear objectives, data other research assets; prevention, diagnosis and treatment of a security and failure to deliver clinical benefit. 7, 8 In healthcare, huge amounts of data are • The strategic importance of R&D wide range of serious and life-threatening collected, but the potential benefits they could Data quality needs to improve dramatically. investment for the Government, especially illnesses. deliver have not been fully realised. If used There is wide variation in data quality across the in the life sciences; effectively and appropriately, health data can NHS, as data is captured across a huge number generate huge value for people in the UK. • A stable, balanced and well-respected CHALLENGES of systems with bespoke data structures and a These benefits can be categorised as follows: legal and regulatory system. While well positioned to take advantage of the significant number of hospital records are still opportunities generated by health data, the UK paper-based. Machine-readable data needs to • Health and social value (primary goal): Numerous efforts to deliver benefits for people and the NHS also face significant challenges. be collected to improve both direct clinical care Provide benefits to patients and to the in the UK through the use of health data are and R&D. Legacy infrastructure and tools are also public by using data to improve preventive already under way and can be built upon: What we call “NHS data” is in reality a very hindering attempts to move to the cloud.9 measures and enable better, faster, diverse set of datasets, with varying value and more cost-effective provision of care. For • NHSX, with investment of more than £1 utility. Electronic health records, where they The NHS currently lacks the capacity to curate example, by enabling patients to access billion per year, is responsible for setting exist, while useful to support clinical practice, data at scale. It requires data science and their health records to improve care national policy for NHS technology, provide largely unstructured data that is often engineering talent on a very large scale. The delivery or by accelerating development of digital and data (including data-sharing difficult to link to other care settings. Data from NHS needs to invest in people – including the 2 drugs. and transparency). Of note, NHSX have pathology (e.g., blood test results), radiology doctors and nurses providing everyday care, recently announced a £250 million as identified in the Topol Review – and talent • Economic value: Create jobs and (e.g., mammogram images), and molecular investment to create the NHS Artificial to ensure the system has an appropriate economic growth by enabling the life studies (e.g., genome sequencing) are already Intelligence Lab in collaboration with the workforce of skilled experts and form ambitious sciences and technology industries showing significant promise, for example Accelerated Access Collaborative (AAC).3 partnerships with the most innovative to develop data-driven solutions, helping identify new targets for a drug therapy. technology vendors to leverage the best cross- technologies and therapeutic interventions • NHS Digital, with a budget of around Datasets like Hospital Episode Statistics (HES) industry expertise in data management. that directly benefit people in the UK. £500 million per year, designs, builds and can be useful to inform population health analyses and the allocation of resources across operates the core national infrastructure, We currently lack the investment to make • Financial value: Provide direct financial health and social care services. However, joining platforms and applications on which the this happen. This investment is required to flows for the NHS through appropriate these varied data together into clean, curated NHS and social care system relies. An attract and retain talent, provide education licensing and value-sharing arrangements and useful forms is not straightforward. example of their recent work is the NHS and training, upgrade data infrastructure, and with the right partners. 9 App, that allows patients to manage GP Estimating the value of and potential benefits improve data quality. appointments, order repeat prescriptions from the data is very difficult, which makes The UK is well placed to capture the opportunity 4 While there are a number of NHS organisations and view their records. the development of robust business cases of using the data to prevent disease and with differing accountabilities with regard to and the negotiation of fair value sharing improve how we deliver health and social care • Health Data Research UK is an NHS data, it is unclear which organisation services. This is because the NHS, as a single- independent, non-profit organisation agreements a big challenge. This is a common
8 9 would be responsible for developing the UK’s • Ensure arrangements entered into by Exhibit 1: Learning from other countries strategy to maximise the impact of health data NHS organisations agree fair terms for and overseeing its delivery. This needs to be their organisation and for the NHS as a addressed urgently. A single organisation should whole. In particular, the boards of NHS US: Digital health companies have ESTONIA: Estonia has been CHINA: China has significantly be accountable for developing and delivering a organisations should consider themselves attracted significant investment an early adopter of using digital boosted its investment in big vision, co-produced with the public and with key ultimately responsible for ensuring that through venture capital, with technologies across the public data and advanced analytics. For stakeholders in the system. any arrangements entered into by their analytics and big data companies sector, and each citizen has example, an investment of 60 billion attracting almost $2 billion of access to their own health record, yuan (£6.7 billion) is funding the organisation are fair, including recognising 15 Finally, while the UK has an opportunity to be the funding by Q3 of 2019. In the which is linked by a unique citizen China Precision Medicine Initiative and safeguarding the value of the data public sector, the Government 10 in a bid to sequence 100,000,000 global leader in this area, other countries have identifier. Datasets are linked, that is shared and the resources that are has allocated close to $2 billion and all interactions are logged genomes by 2030.12 made notable achievements and could leapfrog generated as a result of the arrangement.16 in funding to precision medicine and visible to the patient through the UK. Some notable efforts are summarised in initiative All of US. This research blockchain technology. the exhibit. • Ensure arrangements agreed by NHS programme is engaging 1,000,000 organisations fully adhere to all applicable volunteers of all life stages, health national level legal, regulatory, privacy and statuses, races and ethnicities, and geographic regions, using data BASIC PRINCIPLES security obligations, including in respect of from electronic health records, bio In recent years, a number of organisations the National Data Guardian’s Data Security specimens, physical evaluations, have proposed principles that should guide Standards, the General Data Protection sensors, and other technologies.12 the appropriate use of NHS data. These include Regulation (GDPR) and the Common Law those currently being drafted by Health Data Duty of Confidentiality.16 Research UK and those published in the Life Sciences Sector 2 Deal and the DHSC’s Code of Conduct for Data-Driven Technologies. The AREAS OF ACTION following principles, based on previous efforts, Through our research, we have identified six are most relevant for the purposes of this paper: areas of action to maximise the impact of NHS data on the health and wealth of the United • Ensure any use of NHS data aims to improve Kingdom: the health, welfare and/or care of patients in the NHS, or the operation of the NHS. 1. Public opinion and engagement This may include the discovery of new 2. Data governance and legal frameworks treatments, diagnostics, and other scientific breakthroughs, as well as additional wider 3. Data quality and infrastructure benefits.16 4. Capabilities • Demonstrate active and ongoing engagement with patients and the public 5. Investment in the design, development and governance 6. Value sharing of their activities involving health data to provide assurance that these activities are For each area, we have described the current in the public interest. state (including successes and challenges) and put forward recommendations to explore further. • Encourage the availability and use of FRANCE: The French Government ISRAEL: The Government has AUSTRALIA: The Government data for research and innovation that has recently mandated the creation invested almost $300 million to allocated $374.2 million in 2017 serves public interest, by making data of a ‘Health Data Hub’ which is create a national unified dataset towards a digital health record Findable, Accessible, Interoperable and aimed at boosting and facilitating that will take millions of individual to which every Australian would Reusable by adopting the FAIR Guiding the use of health data for research patients’ information and help have access (“My Health Record”). principles for scientific data management by public and private entities, with collect and curate it in a uniform Following an opt-out period in the ambition of making France a manner to maximise its utility.14 2019, approximately 90% of the 17 and stewardship. global leader in the innovative uses population have access to a digital of health data.13 health record.11 While data available • Ensure arrangements agreed by NHS through My Health Record is organisations are transparent and clearly somewhat limited, the underlying communicated in order to support public policy and infrastructure changes trust and confidence in the NHS and wider are in place. government data policies.
10 BACK TO CONTENTS 11 1. Public opinion and engagement
SUMMARY: • The NHS is one of the most trusted • As trusted guardians in the NHS, there institutions in the UK and this trust has needs to be more proactive engagement been built over decades. with clinicians and other front-line staff on this topic. • Work has been done to understand what people in the UK think about health data use • Citizens have not been involved in setting but a much more detailed understanding is the rules and principles by which decisions needed. about data use are made.
• There is limited understanding of opinions across demographic and socio-economic groups.
The NHS is one of the most trusted institutions UK generally accept the use of health data for in the United Kingdom, with a recent survey provision of individual care and are open to by the Open Data Institute reporting that the some secondary uses of data by the NHS, for majority of respondents were confident that the example, the use of properly anonymous patient NHS would use their data ethically. This research data where there is a clear public benefit (e.g., also showed that people are more likely to share research).20, 21 On the other hand, people tend personal data with the NHS than any other UK to be against sharing health data where it is organisation and that satisfaction with the NHS perceived to solely benefit the private sector, compared favourably with the opinions of other where health inequalities may be exacerbated similar European countries.18, 19 This trust has or where data-sharing may distract from been built over decades and underscores the delivering quality patient care. importance of public engagement and support for the success of any effort that involves the Our understanding of the public’s view on use of health data. sharing data with commercial organisations is improving, but there is more work to be A detailed understanding of what the public done. Wellcome Trust surveys show a decline thinks about data being used and shared is in support for “Health data being accessed critical to the effort to maximise the impact by commercial organisations if they are of health data. We know that people in the undertaking health research” (53% in 2016
12 NHS data: Maximising its impact on the health and wealth of the United Kingdom vs. 39% in 2018).22, 23 A recent workshop are required to understand the views of people showed that people are more likely to accept that are underrepresented in existing studies, anonymised patient data being shared with including people from the devolved nations industry when the NHS receives a benefit and of the UK, from rural areas, from Black, Asian when the NHS is involved in the development of & Minority ethnic groups (BAME) and of lower the resulting data-driven solution. Participants socio-economic status. RECOMMENDATIONS: were also more likely to accept data being shared with industry after being “exposed to We also need to consider the thoughts and 1. Better engage with citizens and NHS staff on the topic of health information and discussion about particular attitudes of clinicians and other front-line NHS staff. In the past, their objections were a data. There are a number of ways that we can promote the sense that this ways that commercial organisations might be is something done with people in the UK, not something done to them. significant factor in the failure of programmes involved in developing healthcare products and For example: services” (18% vs. 45%).21 Similarly, deliberative such as Care.Data. The Wachter Review (2016) research in Scotland in 2013 suggested recommended a long-term national engagement strategy to obtain buy-in from leaders of NHS a. Understand which data licensing d. Ensure we understand the consensus was that private sector access to and value-sharing models are the attitudes and concerns of all trusts (e.g., Chief Clinical Information Officers, personal data should only be granted where most appropriate/ethical, building segments of the UK population. CCIOs) and clinicians, and to engage and this is likely to result in some form of public on existing regional initiatives. 24 listen to front-line workers. The review also benefit. Specific concerns have been raised e. Ensure that these efforts are all about access to data by insurance companies, recommended the campaign focus on meeting b. Involve citizens or citizen bodies brought together to form a more leading to coverage being denied or premiums the needs of “patients, their families, healthcare in decisions regarding the use of cohesive narrative. being more expensive. Some legislation already professionals and the entire nation”, not simply health data, for example, through 26 exists to prevent this, such as the Code on cost savings. public representation on decision- Genetic Testing and Insurance, which forbids making boards. It is not enough to understand and take into insurance companies asking for or taking into account public attitudes. Citizens must be account the result of a predictive genetic test.25 c. Engage early with NHS staff, actively involved in setting the rules and Legislative mechanisms such as this can be including senior trust leaders principles by which decisions about data use (e.g., CCIOs) and clinicians to used to protect against other perceived and are made. This shouldn’t be a one-off exercise understand their opinions and real risks. but embedded into governance. In addition to concerns. Aside from understanding acceptable uses of involving citizens, there is a clear opportunity to health data, it will be important to more deeply be proactive about how information regarding understand the trade-offs citizens are prepared the use of health data is relayed to the public. to make between sharing data for clinical or For example, we can make better use of real- other benefits and the risks in terms of potential world examples where people in the UK have 2. Use what we already know combined with what we can learn through better loss of privacy. The benefits from the use of benefited from data-driven solutions, and public engagement to develop and implement a communications strategy led by health data for individual direct care and for we can provide ongoing transparency on the the NHS on the use of health data, prioritising communications that foster trust, certain secondary purposes are clear (e.g., to organisations that are involved and the role they not just information transfer. For example: inform a patient’s course of treatment, or for will play. For example, in Scotland the Public research to yield new treatments). However, Benefit and Privacy Panel is a publicly-convened a. Describe tangible benefits for data releases and as part of the benefits from other secondary uses, such as for panel that streamlines governance processes citizens using real world examples. UK Health Data Research Alliance 30 service planning, can be less obvious, creating for the scrutiny of requests for access to NHS Innovation Gateway. a challenge when engaging with the public. Scotland originated data to benefit the citizens b. Develop a communications 27 Some benefits from secondary uses of data may of Scotland for purposes other than direct care. strategy for mass and social media, d. Train NHS staff to involve patients including an approach to tackling in decisions about how their health not accrue despite the best efforts from parties Efforts to engage with the public are misinformation. data can be used. NHS staff should involved. For example, attempts to develop complicated by the fact that the words used be aware of resources outlining new interventions using NHS data might be to describe patient data and its uses can c. Communicate more clearly how best practice use of health data unsuccessful. We need to better understand the be confusing, as evidenced by research health data is used, by which and, where appropriate, how and public’s view of these trade-offs even at the risk commissioned by Understanding Patient Data organisations and for what kinds of when to seek consent for secondary of limiting the uses to which these data can who have published their own guidance on projects. For example, by improving uses of health data. be put. terminology.28, 29 Terms such as “anonymised” the visibility and usability of NHS Digital’s register of approved We still don’t know what large segments of the and “consent” can have different meanings in UK population think about health data usage different contexts. and sharing. More engagement and research
14 BACK TO CONTENTS 15 GDPR requires a legal basis to exist in order to research into a medical condition the data to permit the processing of personal data. In subject suffers from, as well as the impact of addition, it prohibits the processing of “special the related right for a data subject to withdraw categories” of personal data (including data consent and request erasure of the data. concerning health, as well as genetic and biometric data) unless a specific exemption Consequently, there will likely be an increased applies.32 Such exemptions include where: reliance on the other statutory exemptions listed rather than consent, which in turn may 2. Data governance 1. Explicit consent has been given by the be subject to public challenge as exemptions data subject to processing for one or more may be perceived as “loopholes” for using and legal frameworks specified purposes; personal data. Additional laws regarding the confidentiality of patient medical records and 2. Processing is necessary for medical the sharing of identifiable patient medical diagnosis, the provision of health or social records will also need to be navigated (for care or treatment or the management of SUMMARY: example, implied consent to sharing only if health or social care systems and the sharing is for the purposes of ongoing • Data governance standards in the NHS have • Some exemptions that provide a legal basis to services; or treatment). been significantly improved in the past ten process personal data are unclear, and there years thanks to efforts such as the National is a risk of such exemptions being perceived 3. Processing is necessary to protect the vital The final two exemptions regarding data Data Guardian. as “loopholes” . interests of the data subject or another processing for reasons of public interest in person where the data subject is physically public health and scientific research both • However, the legal framework governing the • Exemptions regarding data processing for or legally incapable of giving consent; require a basis in UK or EU laws. Notably, the use of personal data in healthcare remains “reasons of public interest in public health” ICO has recently stated that this legal basis 4. Processing is necessary for reasons of complex and creates a number of legal and and “scientific research purposes” both for data processing is provided by the Data public interest in public health, such as societal challenges. require a basis in UK or EU law. Protection Act 2018 itself. This appears to protecting against serious cross-border differ from the position taken in the EU, which threats to health on the basis of EU/UK has tended to look to other legislation as the laws (provided there are suitable and The standards for data governance in the NHS UK’s independent authority set up to uphold legal basis for permitting data processing for specific measures to safeguard the rights have been significantly developed in the past information rights in the public interest, research purposes. For example, in early 2019 and freedoms of the data subject, in ten years – thanks in part to the creation of promoting openness by public bodies and the European Data Protection Board considered particular professional secrecy); the National Data Guardian (NDG) role, held data privacy for individuals. whether the Clinical Trials Regulation could by Dame Fiona Caldicott – and introduced to 5. Processing is necessary for scientific be an appropriate legal basis for permitting While it might be possible to perform ensure that the health data of patients and the research purposes based on EU/UK laws processing of special category data under research using anonymised data, often the public is safeguarded. To improve the security (which shall be proportionate to the aim the public interest or scientific research anonymisation removes some, or a significant of healthcare data, the NDG recommended pursued, respect the essence of the right exemptions.33 The European Data Protection part, of the value of that data. Many uses of ten data security standards for all healthcare to data protection and provide for suitable Supervisor (EDPS) also notes in its preliminary health data involve mining big datasets to organisations to implement. This resulted in and specific measures to safeguard the opinion on data protection and scientific obtain insights, whether regarding public health the Data Security and Protection Toolkit (DSPT), fundamental rights and the interests of research34 that Exemption 5 above is “a new area more widely or in respect of specific diseases, requiring all organisations that have access the data subject). and requires adoption of EU or member state targets, drug discovery or drug development. to NHS patient data to use this online self- law before the use of special categories of data For example, it is often necessary to know if assessment tool to demonstrate their capability This legal framework may create a number of for research purposes can be fully operational”, 31 a disease outbreak is more prevalent in men in implementing the security standards. legal and societal challenges. Exemptions 2 and that “[the exemption] in principle provides or women, of a particular age range, in a and 3 are drawn narrowly and therefore may for processing of special categories of data for The legal framework governing the use of particular geographic area, or with particular only apply in very limited circumstances. scientific research but only on the basis of EU or personal confidential data in healthcare is socio-economic considerations. However, As such, it is likely that the most applicable member state law. However, such laws have yet complex and, in some instances, unclear. retaining these identifiers increases the exemptions for secondary uses of health data to be adopted.” It includes the NHS Act (2006), the Health likelihood that this data is deemed to be merely are 1, 4 and 5 above. However, it may be difficult and Social Care Act (2012), and the Data ‘pseudonymised’ rather than ‘anonymised’ to rely on Exemption 1 (consent) for a number If this type of systematic data Protection Act (DPA, 2018). The Data Protection meaning that GDPR will apply to its use. of reasons, including difficulties obtaining commercialisation is adopted, further Act 2018 is the UK’s implementation of the The deployment of more complex privacy- consent at the time of collection for secondary consideration will be needed to ensure the General Data Protection Regulation (GDPR). enhancing technologies is necessary to enable (potentially then unknown) uses of data, the NHS can comply with its obligations as a Legislation in the DPA is covered by the sophisticated data obfuscation, amongst extent to which consent is able to be freely given data controller generally. These include Information Commissioner’s Office (ICO), the other things. (as required under GDPR) if the data use relates duties around data subjects’ right of access,
16 17 rectification, restriction and objection under This includes potential causes and treatments GDPR, which may only be derogated from in a for a huge range of health problems such as scientific research context if certain conditions back pain, bladder cancer and even bedbugs.35 are met. Compliance with data subjects right This is one of many useful public resources to information (or the relevant exemption to that is freely available under what is called that right) will also need to be considered. the Open Government License (OGL) for public Ensuring such compliance might be costly from sector information. The OGL allows anyone a technical and legal perspective, however the to copy, publish, distribute, adapt and to potential sanctions if the NHS fails to do so are “exploit the Information commercially and non- also significant (up to €20m or 4% of global commercially”. However, where any of the above turnover, whichever is higher). is done, the user must “acknowledge the source of the Information in your product or application Some forms of non-personal health data are by including or linking to any attribution already available to the public and not subject statement specified by the Information to GDPR. This includes anonymised aggregated Provider(s)”.36 Further, this information is meant information created by the government, for to be made available under the same terms to example, the evidence-based information on everyone, as governed by the Re-Use of Public common health conditions on the NHS website. Sector Information Regulations 2015.37
RECOMMENDATIONS:
Clarify the legal frameworks relevant to health data usage and sharing by seeking guidance from the ICO on:
1. Discrepancies and misunderstandings as would the data controller need to identify envisaged by the EDPS on a pan-EU level, a new and separate legal basis for the by increasing dialogue with the research processing of that data if it is compatible community. with the purpose of the original processing? 2. Data usage and data-sharing in healthcare, for both primary and 4. The scope of the “public interest in secondary uses. This could be done the area of public health” exemption in conjunction with the National Data in Data Protection Act 2018, Schedule Guardian and NHSX and should involve 1, Part 1. Likewise, clarity on the scope industry, academia and research of Exemption 4 above when it is relied institutions. Notably, the EDPS has on in conjunction with the legal basis suggested EU codes of conduct and of processing special category data for certifications in respect of a variety of the performance of a task carried out matters requiring clarification. in the public interest (Article 6(1)(e) of the GDPR), would be welcomed and has 3. The extent to which a new legal basis been suggested by the European Data for processing is required where the Protection Supervisor. purpose of subsequent processing is compatible with the purpose of the 5. The DHSC should instruct the ICO original processing. For example, if data to provide this guidance as soon as is initially collected and processed for possible, and fund it to do so. the purposes of a specific clinical trial and the data controller wishes to reuse that data for other scientific research,
18 BACK TO CONTENTS NHS data: Maximising its impact on the health and wealth of the United Kingdom 3. Data quality, standards Health Record System Cerner and infrastructure DXC Technology
System C
Intersystems SUMMARY: Allscripts • Outside of primary care, there is a marked • In recent years there have been positive Meditech difference in data quality, standard efforts to improve data quality and define adherence and interpretation, and standards, such as through the NHS IMS Maxims
infrastructure. Digital’s Data Quality Maturity Index. Graphnet
• Data often requires significant effort to be • Across the NHS, there are examples EMIS Health post-processed, as accurate data are very where data curation is being done well, Teleologic often not captured real-time. for example, NHS Digital’s Hospital Episode Statistics (HES), the Clinical Practice Kainos • Legacy technology and infrastructure are Research Datalink’s (CPRD) primary care TPP delaying the ability to move to the cloud, data and the SAIL databank in Wales. Advanced further holding data quality back. Epic Systems
Single-trust vendor systems
Multiple systems DATA SYSTEMS Outside of primary care there is large diversity in clinical systems, data quality, IT investment, ‘In-house’ systems Data systems and infrastructure have evolved timeliness of data and interoperability of to varying degrees across the NHS. In primary Paper records While all providers have a patient care, practice management software has been systems. administration system, a recent survey showed in use since the early 90s.38 The majority approximately 23% of patient records in acute of hospitals and secondary care providers, hospitals are entirely paper-based, and there however, remained paper-based until the start was limited regional alignment of the systems of the 21st century. In the past two decades, used to process and store these records. Of a multitude of policy and technology changes the 117 trusts using electronic records, the vast resulted in a complex ecosystem of electronic s rd 39 majority (79%) employed one of 21 different co re health records (EHRs). r e p commercially available systems, and 10% were a P Today all GP settings are digitised, and there using multiple different EHRs within the same is a route to convergence on standardised data hospital. However, of those that used a single for all GP systems. The GP IT Futures programme system, almost half (42%) were using one of in England and similar programmes in the three identified systems. Making these three devolved administrations are helping to reform systems interoperable would improve access to the commercial landscape in primary care and information for more than one million hospital
encounters every year, with international as s
to enable a move to open, modern, cloud native d
r
Figure 1: Frequency of use of o c
well as national benefit, where internationally- e
architectures with consistent technical and health record systems by trusts r e
40 s data standards. Nevertheless, local GP usage established data coding and interoperability u
and distribution of health record o
39 h n and data structure remain varied, existing standards are used. systems in NHS England. Each LSOA I proprietary IT system providers are resistant to region in England was assigned the Legacy technology and infrastructure are moving towards open standards and Clinical health record system of the hospital Commissioning Groups (CCGs) must employ delaying the ability to move to the cloud, trust patients from that LSOA most holding data quality back. Cloud computing Multiple staff and still use Commissioning Support frequently attended during the study systems allows large-scale, cost-efficient analysis of Unit (CSU) resources to clean data for returns period. LSOA, Lower Layer Super medical data to support healthcare services, Output Area; NHS, National Health Single trust purposes. vendor systems especially when combined with artificial Service.39
20 21 intelligence.31 When integrated properly, interactions generate some form of electronic the security of cloud-based solutions has record or footprint.49 A single patient typically the potential to exceed that of on-premise generates close to 80 megabytes of data each solutions.41 Furthermore, the costs of on- year in imaging and electronic medical record RECOMMENDATIONS: demand cloud computing and storage are data.50 Every GP holds electronic records lower, which is supportive of the push for of every consultation, in coded form, many 1. Enable codified, real-time data to be captured at source, increased access to EHRs, digital health stretching back decades. However, despite improving data quality in the NHS. solutions and the analysis of medical data for significant improvements in collecting near- research purposes.42 - 44 NHS Digital has issued real time data, such as with the Emergency a. Enforce common standards for c. Ensure that NHS staff that use a guidance document approving healthcare Care Data Set (ECDS) collected by NHS Digital, data capture across the NHS, existing systems are properly organisations’ use of cloud computing accurate data is very often not captured real- signalling as early as possible trained to do so, improving the (provided that appropriate safeguards are put time.51 Significant efforts to post-process the to suppliers of systems such as quality of data captured in the in place).45 However, local service agreements data are often required. Curating datasets EHRs. first instance. for cloud have not been standardised, causing involves the organisation and integration of b. Increase digital maturity and confusion regarding the responsibilities of the data collected from various sources such that shift away from paper-based NHS organisation versus the supplier. the value of the data is maintained over time. processes. The Wachter Review This is particularly difficult in the NHS given the (2016) recommended “all NHS variation in data quality and structures. STANDARDS trusts to reach a high degree of digital maturity by 2023, after In recent years there have been positive Across the NHS, there are examples where which government subsidies efforts to improve data quality and define data curation is done well. For example, NHS should no longer be made NHS Digital is working to improve standards. Digital’s Hospital Episode Statistics (HES), the available.” 26 data quality through the Data Quality Clinical Practice Research Datalink’s (CPRD) Maturity Index, which provides CCGs with the primary care data and the SAIL databank in opportunity to investigate and engage in data Wales.52-54 For years these datasets have been quality improvement with providers, and NHS employed for secondary uses, such as academic England’s Digital Maturity Self-Assessment, research, planning health services and which helps providers measure how well they informing health policy. A number of individual 2. Invest in standards-based infrastructure and cloud-based are making use of digital technology.46, 47 HDR NHS trusts and CCGs have also invested in the services across the NHS. UK has convened a data officers group that capability to curate data at scale in order to brings together expertise from across all UK better plan their own services. In addition, many a. Invest in standards-based Agreements should also avoid Health Data Research Alliance members. There of the 15 Academic Health Science Networks infrastructure across the NHS vendor lock-in by ensuring has been a concerted effort to drive supplier (AHSNs) – established by NHS England to with a minimum of availability providers can lift and shift data behaviour to ensure systems support returns support the adoption and spread of existing and reliability. from one cloud provider to another and standards. Open standards such as the Fast innovations at pace and scale across regional at the end of a contract period. Health Interoperability Resources (FHIR) have networks – have invested in data curation b. Outline in local service improved interoperability of systems. NHSX capabilities. The seven Data Research Hubs agreements the scope of 55 and NHS Digital are working to encourage and also have a major focus on data curation. cloud services, including who enforce data and interoperability standards, is responsible for what, who holding providers to account for implementing FUNDING holds insurance and who’s standards, and driving usability of systems to indemnifying whom. increase data quality at source.48 There are ongoing concerns that the NHS cannot afford to divert funding from direct Nonetheless, there is still a marked difference provision of care towards IT. KLAS Research’s in data quality, standard adherence and Arch Collaborative measured feedback from 200 interpretation, and infrastructure across provider organisations around the world and providers, making it difficult and costly to recommended an annual investment of 3-4% of 56 3. Review the mechanisms for funding IT in the NHS. combine and curate datasets. revenue to run a digitally safe environment. For example,encourage a move towards capital funding of However, few NHS providers meet this Software-as-a-Service (SaaS) solutions, such as cloud, and standard and the Information Management & CURATION away from funding on-site legacy technologies. Technology (IM&T) investment survey to look at NHS services see approximately one million organisational spend on IT disbanded almost a patients every 36 hours and almost all decade ago.
22 BACK TO CONTENTS 23 being implemented. For these to succeed, Academic Health Science Centre accreditation 4. Capabilities there needs to be significant Investment in data process and the Global Digital Exemplar science and engineering capabilities. These programme provide some ideas about how best are still often seen as overheads rather than to both encourage excellence while making sure essential parts of the organisation that can that all NHS bodies are able to gain from this SUMMARY: drastically improve the quality of care and its expertise. cost-efficiency. By contrast, tech companies • To maximise the impact of health data, • More analysis is required to determine continuously invest huge sums in data science While it develops its own capabilities, the NHS a more effective approach is needed whether the NHS should build capabilities and engineering talent, with many of these could continue to partner with organisations to deliver the recommendations of the for the curation of data centrally or within individuals being the companies’ most valued with extensive data science and engineering Wachter and Topol reviews. local NHS organisations. and protected employees. expertise, such as research organisations or technology companies. This could be a way • There are few senior digital leaders in • In the short- and medium-term, the Deciding how and where to build the for those with clinical expertise (NHS staff) to the NHS with the knowledge and skills to NHS could continue to partner with capabilities the NHS needs, particularly for the quickly learn from data scientists. For example, deliver large and complex IT programmes. organisations with extensive data science and engineering expertise. curation of data, will be critical. Options include the Beth Israel Deaconess HealthCare system in • There needs to be significant investment to a national centre of excellence, leveraging the US partnered with data scientists at Amazon attract data science and engineering talent existing SaaS platforms provided by NHS Digital and Google to deliver 11 artificial intelligence 9 to the NHS, particularly from the private or other organisations, multiple hubs across the innovations in under two years. However, such sector. country or the strengthening of expertise locally arrangements where significant investment is in every NHS organisation across the country. provided by industry may have an effect on any More analysis is required to determine which financial returns. approach would be most desirable, but the The importance of investing in capabilities capability at the speed that is required we need and talent to support the digital transformation to bring in talent from outside the system, of the NHS has been articulated effectively. and in particular from the private sector. For example, the Government commissioned a review led by Robert Wachter entitled Making The NHS has started to take action on the RECOMMENDATIONS: IT Work: Harnessing the Power of Health recommendations from the Wachter and Topol Information Technology to Improve Care in Review. The NHS Digital Academy, launched 1. Implement recommendations related to IT and analytical England (2016), and Health Education England in 2018 through a partnership with Imperial capability in the NHS put forward in the Wachter and Topol published The Topol Review: Preparing the College London, the University of Edinburgh and reviews, for example: healthcare workforce to deliver the digital Harvard Medical School, provides a year-long a. Develop a workforce of trained d. Attract graduates in data analytics to 26, 57 programme aimed at Chief Information Officers future (2019). These reviews made clinician-informaticists at NHS Trusts, begin a career in health, to create and (CIOs) and Chief Clinical Information Officers recommendations for citizens, healthcare and give them appropriate resources. implement technological solutions (CCIOs) to drive the information and technology professionals and the health system across that improve care and productivity in 58 emerging fields such as genomics, digital transformation of the NHS. In addition, the b. Invest 1% of the £4.2 billion to the NHS.57 medicine, artificial intelligence and robotics. NHS Graduate Management Training Scheme be spent on digitising the NHS to Amongst the recommendations in The Topol includes Health Informatics as one of its six support workforce development and e. Ensure genomics and data analytics Review was a call to “attract, recruit and streams, training NHS staff over two years deployment (these figures might are prominent in undergraduate require updating).26 curricula for healthcare professionals retain talented science, mathematics and in core areas such as data collection and and offer opportunities for healthcare computing graduates to fulfil leadership roles storage, extraction of data from source systems c. Attract, recruit and retain talented students in areas such as engineering into data warehouses, clinical coding and in ‘bioinformatics’” (including computational science, mathematics and computing or computer science.57 genomics, data science and public health standardisation, and information management, graduates to fulfil leadership roles in informatics). governance and security.59 bioinformatics.57
A more effective approach is needed to deliver At present, there are very few senior digital 2. Review how IT and analytical talent in the NHS are paid, leaders in the NHS who have both the core the recommendations of the Wachter and including salaries and incentive structures, to increase knowledge and skills to commission or deliver Topol reviews and compete for the talent the competitiveness with private sector employers. large complex IT programs and the operational NHS needs to maximise the impact of health experience of having done so. The lack of these data. The next five-year cycle will encompass the broadest and most ambitious digital 3. Determine which approach to building data capability leaders in the NHS is simply a direct result of (centralised, hubs, local) fits the needs of the NHS. the slow digital transformation of the system transformation agenda ever undertaken in the over the last decade. In order to scale this NHS with multiple, parallel, complex programs
24 BACK TO CONTENTS 25 leverage in private sector money, for example ecosystem that private funding could make the 5. Investment through partnering with pharma companies to biggest contribution, while the Government will whole genome sequence the samples it holds, continue to support research and development to improve the quality of its asset in a way that directly. This would help grow local health retains the trust of its participants. economies and benefit the UK population in two ways: as NHS patients and as taxpayers. This SUMMARY: Investment of this magnitude in data scenario is not unrealistic, and there have been • Despite national investment to improve • Improvement in healthcare data and data and capabilities will unlock significant recent examples of public/private partnerships the digital infrastructure in healthcare, there infrastructure will unlock opportunities for opportunities for research and development in the life sciences industry. For example, the has not been a true step-change in the value research and development and enable an by public and private organisations. Government recently invested £79 million in the and use of data in the NHS. innovation ecosystem that attracts billions Innovations developed from NHS data ‘Accelerating Detection of Disease’ initiative, of pounds in private investment. could then further contribute to healthcare which is expected to attract £160 million • A major increase in government improvements, but also to economic growth investment from industry. The collaboration also investment is needed to achieve the • For the UK to maintain its position as a top and prosperity in the UK. The life-sciences brings in partners from the NHS and leading required improvements in data quality, destination for research and development, and technology industries contribute billions infrastructure and capabilities. clear rules need to be in place along with charities including Alzheimer’s UK, British of pounds to the UK economy, have an 68 appropriate incentives for innovators. Heart Foundation and Cancer Research UK. international reputation for health innovation Moreover, as the public become increasingly and employ huge numbers of people in the UK interested in - and potentially cautious about - (140,000 in the life sciences sector alone).67 how their data is used, it could provide a new Achieving the required improvements in data significant improvements to data quality Both life sciences and artificial intelligence are model for securing the active consent of the quality, infrastructure and capabilities will across the NHS, the collection of machine- key priorities for the UK’s industrial strategy. public to provide their health data for research require a significant increase in current levels readable data at source and the technological With better healthcare data, accessed in an purposes in exchange for direct health benefits. of investment. Doing so at the speed and scale infrastructure required for curation, storage, appropriate and publicly approved way, these required to make a difference to patient care manipulation and linking. strategic sectors of the UK economy could However, for the UK to maintain its position and maintain the UK’s competitive advantage in further thrive. Research organisations could as a top destination for research and this area is imperative. We must also continue The most appropriate source of funding to strengthen their position as global leaders in development, clear rules need to be in to determine which innovation mechanisms, improve data quality, infrastructure, and health research and innovators from all sectors place along with appropriate incentives for The such as public/private partnerships, can create capability is likely to be government. could develop the healthcare interventions of innovators. First of all, as discussed in previous the conditions for innovation to thrive. investment will deliver significant public the future. sections, data access should be structured in benefit, although more work is needed a way with which the public is comfortable. In Over the past five years there has been to quantify the size of the improvement it Significant improvement in healthcare data addition, mechanisms should be in place for significant national investment to improve the could bring to direct patient care and system and data infrastructure may give rise to an the NHS, and therefore UK taxpayers, to receive digital infrastructure in healthcare. This has efficiency. Investment from long-term, non- innovation ecosystem able to attract billions of fair value for the data (see next section for included £250 million to set up the Artificial speculative private sector actors based in the pounds in private investment. It is within this more details). Intelligence Lab through NHSX in 2019,60 UK (for example, insurance companies) might £43 million to build a cloud first approach to also be an option, but more work is needed data processing and improve data access at to understand what form of private sector NHS Digital, the funding of the Global Digital investment would be acceptable to the public. RECOMMENDATIONS: Exemplars (2018), Fast Followers (2019) By setting out clear priorities for data quality and Local Health Care Record Exemplars 1. Increase government investment as the world-leader in this area, 62, 63 and infrastructure, the NHS can direct industry programmes, and the establishment of in data quality, infrastructure, building on existing efforts such Health Data Research UK (HDR UK), which to focus efforts in these areas. Too often ideas and capability. This is likely to as the Life Sciences Sector Deals. in turn awarded £22 million to seven Digital are generated by the private sector, but this require billions of pounds above Greater scale up capital is the Innovation Hubs (through the industrial strategy supply-led approach means that important what is currently invested to achieve most urgent use case. challenge fund).64 areas can be left behind.The involvement a step-change in the value and use of research organisations or charities may of data in the NHS. 3. Focus on significant new However, there has not been a true step- be more acceptable to public opinion. The opportunities such as the change in the value and use of data in the registered charity UK Biobank is an example of 2. Develop a clear UK wide strategy Accelerating Detection of Disease NHS. Some senior healthcare leaders have where funds from the Department of Health in to attract investment specifically and other cohort studies that identified funding as the main barrier to the partnership with the Wellcome Trust and the in data-driven health innovation pioneer new models of consent digital transformation of the NHS and estimate Medical Research Council (MRC) have resulted with the aim of establishing the UK and active patient participation. investment to be in the order of £3 billion. in world class datasets with widespread public 65 If deployed effectively, this could pay for support.66 The Biobank has also been able to
26 BACK TO CONTENTS 27 Exclusive access to data should not be granted should be given to the extent to which the data 6. Value sharing where data has been assembled by the NHS is material, whether the NHS entity is providing or another government-funded organisation. other “value-added” services, and whether Granting exclusivity is unlikely to be in the an equivalent dataset can be easily obtained public interest or the interest of science and the elsewhere. SUMMARY: Department of Health & Social Care has recently banned NHS Trusts from striking exclusivity It is critical and urgent to have a public • The NHS should receive fair value for the • It is urgent to have a public debate on deals with the private sector.71 debate on this topic. Many organisations have use of its data, whether financial or in kind; this topic as many NHS organisations are begun engaging with research and commercial failing to ensure that the NHS is properly currently engaging with organisations It is unclear who within the NHS should receive organisations on data-sharing but have received compensated may influence public trust. without central guidance. the benefits generated from licensing data, no central guidance on how to structure or whether it is the individual NHS organisation, negotiate these complex arrangements. In • There is no best practice for how NHS • We have provided a framework that the NHS centrally or a separate body set an encouraging sign, NHSX has committed organisations should respond to health data describes the different value-sharing requests from commercial companies. arrangements that could be used by NHS up by the NHS (for example, the idea of a to develop a National Centre of Expertise to organisations. (Table 1) Sovereign Health Fund has been proposed and focus on this topic and it is hoped that they 72 • It is unclear who within the NHS should discussed in Parliament). More sophisticated will take the lead in this space. The Office for receive the benefits generated from NHS organisations are more likely to be Life Sciences (OLS) are currently drafting a full licensing data. willing and able to enter into sophisticated, policy framework, which will provide guidance mutually beneficial data- and value-sharing for NHS organisations to ensure they can enter arrangements with companies. If the benefits into appropriate data access agreements are solely captured locally, these organisations for healthcare data with innovators. This is The NHS should receive fair value for the use disproportionate models risks industry turning will become more prosperous and able to invest due to be published in the next few months of its data, whether financial or in kind, but to datasets in other countries, eroding the UK’s in data collection, curation and partnership and will underpin the advice provided by the the question of if and how the NHS should competitive advantage in this space. development. This might result in some Centre of Expertise. The Centre will “oversee be compensated is often overlooked in organisations being left behind, exacerbating the framework, provide specialist commercial discussions. Yet, for years, access to NHS Further, failing to ensure that the NHS is inequalities across the system. and legal advice to NHS organisations entering data has been available for a fee, including properly compensated may imperil public trust data agreements, develop standard contracts 69 information on all hospital admissions (HES) in the medium- and long-term. During the last We have provided a framework that describes and guidance, and ensure that the advantages and on a significant proportion of primary General Election, CPRD was in the news under the different value-sharing arrangements that of scale in the NHS can deliver benefits for care interactions (CPRD). These datasets the headline “Patient data from GP surgeries could be used by NHS organisations (Table 1). patients and the NHS”.73 The creation of this 70 have been available for decades to assist sold to US companies”. The strength and Some of these arrangements involve simple Centre must proceed as a matter of urgency. the advancement of health research. Data is negativity of the response suggests that current transactions (e.g., a one-off payment to license shared in anonymised format and according to public awareness of these datasets and of how data), whereas others are linked to outcomes well-structured processes governed by public they are shared is very low. and could result in a longer relationship agencies, such as NHS Digital, the Medicines (e.g., equity share). Each arrangement – or and Healthcare products Regulatory Agency There is no best practice for how NHS combination of arrangements – comes with (MHRA) and the National Institute for Health organisations should respond to data requests potential benefits and risks and should be dealt Research.52, 53 from research or commercial organisations, with on a case-by-case basis. Considerations and many do not have the experience to We believe that NHS data should continue to conceive, structure, and negotiate complex be made available to innovators in healthcare, and/or innovative commercial data including private companies from outside the arrangements. It often comes down to an RECOMMENDATIONS: UK. However, this should happen according to a exchange of data for the promise of free access robust and appropriate set of principles and in a to products that might be developed. While that 1. Provide NHS organisations with 2. Strengthen the support available way that the public is aware of, has contributed may be an appropriate outcome in some cases, a clear framework and guidance to NHS organisations for the to and support. Well thought-out and mutually in other cases there may be an opportunity to for entering into value-sharing negotiation of data and value- arrangements when licensing data. sharing agreements. Expertise in beneficial health data access arrangements take a different approach. It will be important This should come from NHSX’s structuring complex data-sharing can encourage collaboration, whereas pushing for the NHS to have personnel who have experience in identifying when NHS data is Centre of Expertise mentioned arrangements should be built forward with ad-hoc licensing arrangements above and can build on our within the NHS, both at central of particular value and knowledge of the best comes with a high risk of undermining public proposed framework below. and local levels. trust in the NHS. Further, a failure to develop types of arrangements to license data on these models or adopting inappropriate/ a case-by-case basis.
28 BACK TO CONTENTS 29 Table 1: Value-sharing framework for the NHS 74, 75
MAIN BENEFITS MAIN BENEFITS AGREEMENT DESCRIPTION POTENTIAL ISSUES AGREEMENT DESCRIPTION POTENTIAL ISSUES FOR THE NHS FOR THE NHS
No value The NHS shares data • No direct economic • The NHS does not get any Profit share The NHS receives a portion • NHS receives income • NHS would have to pay for tools sharing for free. benefit for NHS, but there share of the economic return of the profits generated by every year that the developed using its data. is potential for patient and on products using the data or its industry partner. company is profitable • May be resisted by established system wide benefit by access to products. (irrespective of partners and therefore adopted by openly sharing data whether a specific small and medium-sized enterprise for free. profitable product is (SME) partners which may not be created). profitable for some time. The product developed • NHS as a whole or an • No additional value Free or • Industry may require exclusivity in using an NHS dataset is individual organisation specifically captured from discounted respect of the data limiting the NHS’s provided to the contributing gets access to cutting-edge product revenues. products ability to deal in the data with third NHS organisation for free or products at no or reduced • Risk that no useful product is parties. at a discount (for a defined cost. developed. or unlimited period of time.) The NHS owns (alone • IP ownership for • IP ownership does not itself The product might also be IP ownership • If the product is discounted or or jointly) some of the the NHS. generate revenue. offered to the rest of the share free only for one organisation, intellectual property NHS at a discount. other NHS organisations will generated in the project • Potential for royalties • Difficult to manage: will tie NHS into still have to pay for it. which uses its data. based on the use a relationship with the company for of the NHS-owned as long as it retains a joint ownership • The provision of a product free IP as part of a wider interest, creating an administrative of charge would need to be package. burden for the NHS. reviewed to ensure no breach • Potential to have • Unappealing to companies: NHS of regulatory compliance some control over involvement might complicate decision obligations by industry. how the IP is used making and hinder company progress. and exploited (subject to • Unusual for mere provision of data to One-off NHS receives a one-off • Quick and certain access • Depending on the pricing, this contractual justify IP ownership; the NHS will likely payment payment in exchange for to funds with no risk or could generate limited value for arrangements). need to demonstrate a more substantial access to the data. ongoing relationship the NHS (e.g., HES). role in the co-development of any IP required. e.g. clinical input. • Depending on the fee, this • Potential to license same may create a financial barrier • Industry may require exclusivity in datasets for same uses to initial access to data, respect of the data limiting the NHS’s to multiple parties to potentially penalising smaller ability to deal in the data with third maximise revenue. companies. parties.
Equity share The NHS receives a • Ownership interest in • Difficult to decide what a fair share Royalty/ The NHS receives a royalty • Potential long term • NHS would have to pay for tools share of the equity of company developing of the equity for the NHS would be. revenue on revenue from products source of income. developed using its data. the company developing product and potential • Main return might be capital share developed using its data. solutions from the data. to have a say in its appreciation on sale (if any) as little • Likely to generate the • Risk that no revenue-generating activities. most income for the NHS. product is developed. or no dividends might be generated for a while. • Industry may require exclusivity in respect of the data limiting • Likely unappealing to established the NHS’s ability to deal in the companies. data with third parties. • NHS involvement as a minority shareholder might complicate company decision making and be burdensome to manage for the NHS.
30 31 MAIN BENEFITS AGREEMENT DESCRIPTION POTENTIAL ISSUES FOR THE NHS
• Industry may require exclusivity in respect of the data limiting the NHS’s ability to deal in the data with third parties.
Golden share The NHS receives an • NHS or DH could • Restrictive model for industry, giving equity share which essentially control the the NHS or the Government control is able to outvote all business and therefore over strategic decisions. other shareholders in require the company to certain predetermined be based in the UK and • Unclear financial benefit for the circumstances. provide ongoing benefits NHS; this would result from the to the health system. direction of the management of the company.
• This model seems unlikely to be used where the only contribution is data. Rather this (and ownership of IP above) suggests a more integrated development team (e.g., NHS provides clinical test bed, clinical expertise and a strong package of rights in return for industry).
• Industry may require exclusivity in respect of the data limiting the NHS’s ability to deal in the data with third parties.
Multiple one- NHS receives multiple • Increased revenue vs • If product is unsuccessful NHS may off fees linked one-off payments one-off payment. only receive small sum. triggered by the to product • Less complex to administer licensee achieving • Audit may be required to verify if sales vs other models. certain regulatory and milestones have been met. product milestones • More likely to be accepted • Total milestone payments may only (e.g., start of clinical by industry as payments be a fraction of overall revenues if trial, regulatory linked to success. product is highly successful. approval, volume of • Could reduce the “financial sales, in each case of barrier” for smaller a product relying on companies as mentioned the relevant data). above as larger payments are made when/if a product is successful.
Spin-out DH sets up a wholly • Would allow DH to ring- • Until a third party investor or owned business to fence legally, financially collaborator is engaged, this vehicle hold the relevant IP and operationally would not generate any revenue. or data asset with key assets for a view to obtaining commercialisation. • Might be perceived by the public as further investment in a wholesale effort to commercialise the company or out- data. licensing.
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SUGGESTED CITATION Ghafur S, Fontana G, Halligan J, O’Shaughnessy J, Darzi A. NHS data: Maximising its impact on the health and wealth of the United Kingdom. Imperial College London (2020) doi: 10.25561/76409