Ensuring that the NHS realises fair financial value from its data
Authors: Gianluca Fontana, Saira Ghafur, Lydia Torne, Jonathan Goodman, Ara Darzi
Journal: The Lancet Digital Health (2019)

The National Health Service (NHS) in England, UK, collects a huge amount of health-care data. It has one of the most comprehensive, longitudinal patient-level datasets in the world. If properly utilised and connected, these data could have a substantial effect on the quality and sustainability of care and lead to discoveries and solutions that would benefit patients in the UK and worldwide. However, the NHS does not currently have the resources and skills to capture the value of its data. It is investing in strengthening its own capabilities, as shown by the launch of the NHS Digital Academy, the actions taken in response to the Topol Review, and the priorities in the NHS People Plan. At the same time, the NHS is increasingly relying on partnerships with industry to find the best uses for the data. These types of collaborations are bound to continue to be part of the NHS's approach in the future, alongside the development of internal capacity and continued work with other organisations, such as academic institutions. For these collaborations to be successful and acceptable to the public, they need to be governed by a clear framework that robustly addresses questions of privacy, ethics, security, and what value is provided to the NHS in the sharing of these data. Substantial progress has been made in defining the legal framework around data sharing—eg, with the introduction of the EU's General Data Protection Regulation (GDPR)—although a lot more work needs to be done, specifically in the health-care sector. The policy framework in the UK has been developing rapidly, including through the publication of the Code of conduct for data-driven health and care technology, the proposed launch of a Centre of Expertise on health data benefit realisation by the Office of Life Sciences, and the creation of NHSX, which clarifies accountability for digital transformation in the NHS. However, a strategy on how the NHS and its component organisations should share the benefits generated from its datasets still needs to be defined. Such a strategy would be very different from trying to maximise financial returns by selling off data, something that would clearly be inappropriate and not supported by the public. In this Comment, we aim to start a debate on the topic of financial value generated from health-care data, an important topic in the UK and globally, and to give a broad overview of the key questions in this area. Each one of the issues raised, and particularly the ethical and legal implications of generating financial value from patient data, deserves more detailed treatment that goes beyond the scope of this Comment. Public support is crucial for any data exchange in the NHS. Research shows that views about data sharing are mixed and that substantially more research is needed to understand these attitudes across all subpopulations.1West B Cumella A Data sharing and technology: exploring the attitudes of people with asthma. Asthma UK, London2018Google Scholar, 2Healthwatch EnglandHow do people feel about their data being shared by the NHS? Healthwatch 2019.https://www.healthwatch.co.uk/report/2018-05-17/how-do-people-feel-about-their-data-being-shared-nhsDate: May, 2018Date accessed: December 5, 2019Google Scholar, 3CurvedThinkingUnderstanding public expectations of the use of health and care data. The CurvedThinking Partnership, July, 2019Google Scholar, 4Tully MP Bozentko K Clement S et al.Investigating the extent to which patients should control access to patient records for research: a deliberative process using citizens' juries.J Med Internet Res. 2018; 20: e112Crossref PubMed Scopus (25) Google Scholar People have conflicting views about how and under what circumstances data should be shared, and many are uncertain about the idea of commercial companies having access to their health data. Steps should be taken to ensure that the public fully recognises the risks of data sharing to make an informed decision about whether the benefits outweigh the risks. Data science opportunities in health care can pose pressing issues of equity, responsibility, and human rights.5Floridi L Taddeo M What is data ethics?.Philos Trans Math Phys Eng Sci. 2016; 37420160360Crossref PubMed Scopus (178) Google Scholar The UK Data Service outlined a set of ethical issues that are intrinsic to data sharing, including privacy, informed consent, de-identification, inequality, and research integrity. These issues are interconnected and addressing each is likely to help mitigate the risk of the others. The EU GDPR, the Human Rights Act 1998, and frameworks such as the Organisation for Economic Co-operation and Development Recommendation of the Council on Artificial Intelligence are in place to protect personal data; however, whether the nuances of these acts and regulations are fully appreciated in the health-care context is uncertain. Any comprehensive framework for data exchanges must consider that all these principles are accounted for. Although patient benefit should be the key priority for the NHS and the main reason to share data with partners, it does not need to be the only type of return for the health service. NHS data, like other public sector knowledge assets, can also deliver direct financial value, providing a return to the taxpayer. In fact, the public is likely to have a negative reaction if the NHS contribution to the value of what is developed from its data is not sufficiently recognised, which could undermine the public's trust in data sharing and call for the introduction of a more structured framework for value sharing. Unfortunately, numerous challenges exist to accurately estimating the value of NHS data as an asset. Such challenges are a common problem with intangible assets such as data and information. Ways to estimate the value of intangible assets (cost, market, and utility or income approach) exist, but are not easily applicable in the NHS context. The UK Treasury provided a useful reference point by estimating the value (£150 billion) and the potential return (at least £5 billion per annum)6HM TreasuryGetting smart about intellectual property and other intangibles in the public sector: budget 2018. HM Treasury, London2018Google Scholar of all public sector knowledge assets in the UK. Estimating the costs of creating, collecting, curating, and maintaining the data and systems related to the management of datasets is a good way to estimate how valuable NHS data might be. Across the continuum, from front-line data collection to the curation and storage of these data at the national level, the cost of generating these data is likely to amount to several billions of pounds per year, driven in large part by staff costs. Doctors and nurses spend a substantial amount of time inputting data into the Electronic Health Record system.7Sinsky C Colligan L Li L et al.Allocation of physician time in ambulatory practice: a time and motion study in 4 specialties.Ann Intern Med. 2016; 165: 753-760Crossref PubMed Scopus (716) Google Scholar The cost of this time is likely to be in the range of billions of pounds per year. Furthermore, the NHS employs thousands of staff members in technology and data-related roles, which, to varying degrees, support the creation and management of its data. The expense of technology systems across primary care practices and NHS Trusts is hundreds of millions of pounds per year. NHS digital's budget is around £400 million per year, although not all of it is necessarily devoted to data creation and management. The fact that NHS data are costly to produce and manage does not in itself mean they are valuable. Much of the data are currently fragmented—although they could be linked—and are not in a machine-readable format. In several cases, private sector partners have been expected to undertake major value-adding activities on NHS data, as is the case in the partnership between Google Deepmind and Moorfields Eye Hospital.8Moorfields Eye Hospital NHS Foundation TrustBreakthrough in AI technology to improve care for patients. Moorfields Eye Hospital.https://www.moorfields.nhs.uk/content/breakthrough-ai-technology-improve-care-patientsDate: September, 2019Date accessed: December 5, 2019Google Scholar Substantial investment in computer systems and data quality improvements could boost the value of the data, both in terms of benefits for patients and financial returns. When collaborating with private sector companies and sharing data with them, the NHS should consider how it can realise financial value from the exchange and be aware that several value-sharing mechanisms are available. Although the right mechanism will vary depending on the specific circumstances of the partnership, all relevant decision makers in the NHS need to be aware of what the options are. Through interviews with experts, a review of existing literature on the topic,9Harwich E Lasko-Skinner R Reform. Making NHS data work for everyone. Reform, LondonDecember, 2018https://reform.uk/sites/default/files/2018-12/NHSdata%20-%20no%20gif%20SP.pdfDate accessed: December 5, 2019Google Scholar, 10Future Care CapitalHarness the value of NHS data as part of plans to deliver long-term sustainability. Future Care Capital, LondonJune, 2018https://futurecarecapital.org.uk/press_releases/harness-the-value-of-nhs-data-as-part-of-plans-to-deliver-long-term-sustainability/Date accessed: December 5, 2019Google Scholar and the direct involvement of legal experts in the development of this Comment, we have identified a range of possible mechanisms for NHS organisations to share in the financial value derived from the data it shares with external partners (panel).PanelValue sharing mechanisms available to health services•Getting free or discounted access to products developed from the data•Receiving a one-off payment in exchange for data access or a series of one-off payments based on regulatory and commercial milestones•Receiving a royalty payment or share of the revenue from the products that are developed using the data (including by leveraging shared ownership of intellectual property generated in connection with the partner's data mining)•Receiving a share of the profits of the company commercialising the data•Receiving a share of the equity in the company commercialising the data•Receiving a so-called golden share, which in specific predetermined circumstances can out-vote all other shares in the company commercialising the data •Getting free or discounted access to products developed from the data•Receiving a one-off payment in exchange for data access or a series of one-off payments based on regulatory and commercial milestones•Receiving a royalty payment or share of the revenue from the products that are developed using the data (including by leveraging shared ownership of intellectual property generated in connection with the partner's data mining)•Receiving a share of the profits of the company commercialising the data•Receiving a share of the equity in the company commercialising the data•Receiving a so-called golden share, which in specific predetermined circumstances can out-vote all other shares in the company commercialising the data Selecting the most suitable option (or combination of options) will depend on several factors, including the quality of the data, the type of end product, the extent of its reliance on NHS data, the availability of other appropriate datasets, the extent of the NHS's inventive contribution, and how much work and costs the commercial partner will need to invest to make the data useful. Defining who should receive the benefits from the data (eg, individual NHS organisations, the central NHS, a separate body set up by the NHS) would also be crucial. Several factors might restrict the NHS's access to the most desirable options outlined here—eg, the quality of the data, the contribution of the NHS beyond the sharing of data, and the appetite for risk that is embedded in some of the options. We do not propose that the NHS drastically increase data sharing with industry players to maximise income; however, the terms of the current stock and pipeline of partnerships involving an exchange of data differ. Going forwards, a clearer strategy for realising the value of NHS data is required. We have four key recommendations. First, policy in this area should be based on a more robust understanding of the public's perspectives towards value sharing (not only data sharing), including their complexity and diversity. The consultation should result in a set of policy principles that will underpin all other suggested developments in this area. Second, more and better evidence is needed on the value of the NHS data assets and on the potential value-sharing mechanisms. Third, a clearer business case for investment in the improvement of NHS data for improved care and for the realisation of other forms of societal and economic returns is needed. Finally, more support should be given to individual organisations (either decision support tools or a centralised negotiation process) to ensure that they, and the NHS more broadly, do not end up in disadvantageous data-sharing deals. If policymakers get this process right, we all stand to benefit, both as patients and as taxpayers. AD is an adviser to Google DeepMind, and all other authors declare no competing interests. The team at Imperial College London is supported by the National Institute for Health Research (NIHR) Imperial Patient Safety Translation Research Centre (PSTRC). Infrastructure support was provided by the NIHR Imperial Biomedical Research Centre. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health.