NHS data: Maximising its impact on the health and wealth of the United Kingdom Saira Ghafur, Gianluca Fontana, Jack Halligan James O'Shaughnessy & ...

NHS data: Maximising its impact on the health and wealth of the United Kingdom Saira Ghafur, Gianluca Fontana, Jack Halligan James O'Shaughnessy & ...
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
NHS data: Maximising its impact on the health and wealth of the United Kingdom Saira Ghafur, Gianluca Fontana, Jack Halligan James O'Shaughnessy & ...

                                                                                             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
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
NHS data: Maximising its impact on the health and wealth of the United Kingdom Saira Ghafur, Gianluca Fontana, Jack Halligan James O'Shaughnessy & ...

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             better R&D?
              Dr. Harpreet Sood *
                                             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)?

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NHS data: Maximising its impact on the health and wealth of the United Kingdom Saira Ghafur, Gianluca Fontana, Jack Halligan James O'Shaughnessy & ...

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
to answer some of the essential questions this
                                                       of health data for their citizens.
                                                                                                           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
                                                                                                           world where big data has increasing value, the      quality of the UK’s health data assets. These
 1. Patients must feel a sense of agency               Lord Ara Darzi
                                                       Co-Director                                         UK has an opportunity to leverage its health        include the creation of the UK Biobank and
    and control over what happens to their data;                                                                                                               multiple disease registries, especially in the
                                                       Institute of Global Health Innovation               data assets to benefit people in the UK and
                                                       Imperial College London                             across the world – both through better health       field of cancer care, and the Global Digital
 2. Health data must always be used in a way
                                                                                                           and through the generation of more research         Exemplars programme in hospitals. The key
    that is safe, secure, legal and ethical; and
                                                                                                           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
Get it wrong, and the public will withdraw their       Institute of Global Health Innovation                                                                   research purposes. The current Secretary of
                                                                                                           – and the growing cost of new kinds of precision
support. By following our proposals, the NHS           Imperial College London                                                                                 State for Health and Social Care has created a
                                                                                                           medicine. Using health data to improve the
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.

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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

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bringing together 22 research institutes        problem with intangible assets. While valuation
Introduction: Maximising                                                                                        across the UK, which has in turn funded
                                                                                                                seven Digital Innovation Hubs, through
                                                                                                                                                                methodologies exist and have been recently
                                                                                                                                                                used by the Government,6 their applicability to
the impact of the UK’s health data                                                                              the Industrial Strategy Challenge Fund
                                                                                                                (ISCF), to enable a UK-wide life sciences
                                                                                                                                                                the NHS context needs further development.

                                                                                                                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
OPPORTUNIT Y                                         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             addresses questions of privacy, ethics, security
health systems in the world, there is still          large and diverse population. In addition, other
                                                                                                                more than £250 million for the introduction     and what value is provided to the NHS in the
room for improvement in UK health outcomes.1         complementary strengths include:
                                                                                                                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              the Government, aims to improve the
of new therapies.                                                                                                                                               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                                                                         wide range of serious and life-threatening
                                                       •   The strategic importance of R&D
collected, but the potential benefits they could                                                                illnesses.                                      Data quality needs to improve dramatically.
                                                           investment for the Government, especially
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                                                            be collected to improve both direct clinical care
                                                                                                          and the NHS also face significant challenges.
        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
        drugs.                                             and transparency).2 Of note, NHSX have         pathology (e.g., blood test results), radiology       doctors and nurses providing everyday care,
                                                           recently announced a £250 million              (e.g., mammogram images), and molecular               as identified in the Topol Review – and talent
    •   Economic value: Create jobs and                    investment to create the NHS Artificial        studies (e.g., genome sequencing) are already         to ensure the system has an appropriate
        economic growth by enabling the life               Intelligence Lab in collaboration with the     showing significant promise, for example              workforce of skilled experts and form ambitious
        sciences and technology industries                 Accelerated Access Collaborative (AAC).3       helping identify new targets for a drug therapy.      partnerships with the most innovative
        to develop data-driven solutions,
                                                                                                          Datasets like Hospital Episode Statistics (HES)       technology vendors to leverage the best cross-
        technologies and therapeutic interventions     •   NHS Digital, with a budget of around
                                                                                                          can be useful to inform population health             industry expertise in data management.
        that directly benefit people in the UK.            £500 million per year, designs, builds and
                                                           operates the core national infrastructure,     analyses and the allocation of resources across
                                                                                                                                                                We currently lack the investment to make
    •   Financial value: Provide direct financial          platforms and applications on which the        health and social care services. However, joining
                                                                                                                                                                this happen. This investment is required to
        flows for the NHS through appropriate              NHS and social care system relies. An          these varied data together into clean, curated
                                                                                                                                                                attract and retain talent, provide education
        licensing and value-sharing arrangements           example of their recent work is the NHS        and useful forms is not straightforward.
                                                                                                                                                                and training, upgrade data infrastructure, and
        with the right partners.                           App, that allows patients to manage GP         Estimating the value of and potential benefits        improve data quality.9
                                                           appointments, order repeat prescriptions       from the data is very difficult, which makes
The UK is well placed to capture the opportunity           and view their records.4                                                                             While there are a number of NHS organisations
of using the data to prevent disease and                                                                  the development of robust business cases
                                                                                                                                                                with differing accountabilities with regard to
improve how we deliver health and social care          •   Health Data Research UK is an                  and the negotiation of fair value sharing
                                                                                                                                                                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
                                                                                                           analytics and big data companies        sector, and each citizen has            example, an investment of 60 billion
stakeholders in the system.                               any arrangements entered into by their
                                                                                                           attracting almost $2 billion of         access to their own health record,      yuan (£6.7 billion) is funding the
                                                          organisation are fair, including recognising     funding by Q3 of 2019.15 In the                                                 China Precision Medicine Initiative
Finally, while the UK has an opportunity to be the                                                                                                 which is linked by a unique citizen
                                                          and safeguarding the value of the data           public sector, the Government           identifier.10 Datasets are linked,      in a bid to sequence 100,000,000
global leader in this area, other countries have          that is shared and the resources that are        has allocated close to $2 billion                                               genomes by 2030.12
                                                                                                                                                   and all interactions are logged
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,
BASIC PRINCIPLES                                          security obligations, including in respect of
                                                                                                           and geographic regions, using data
                                                                                                           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
                                                     AREAS OF ACTION
of Conduct for Data-Driven Technologies. The
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
                                                      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”).
                                                                                                           by public and private entities, with    collect and curate it in a uniform      Following an opt-out period in
     principles for scientific data management
                                                                                                           the ambition of making France a         manner to maximise its utility.14       2019, approximately 90% of the
     and stewardship.17                                                                                    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.

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1. Public opinion
and engagement

     • 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

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.                                R ECO M M E N DAT I O N S :
were also more likely to accept data being
shared with industry after being “exposed to         We also need to consider the thoughts and
                                                     attitudes of clinicians and other front-line          1. Better engage with citizens and NHS staff on the topic of health
information and discussion about particular                                                                data. There are a number of ways that we can promote the sense that this
ways that commercial organisations might be          NHS staff. In the past, their objections were a
                                                                                                           is something done with people in the UK, not something done to them.
involved in developing healthcare products and       significant factor in the failure of programmes
                                                                                                           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
personal data should only be granted where           trusts (e.g., Chief Clinical Information Officers,
                                                                                                                most appropriate/ethical, building         segments of the UK population.
this is likely to result in some form of public      CCIOs) and clinicians, and to engage and
                                                                                                                on existing regional initiatives.
benefit.24 Specific concerns have been raised        listen to front-line workers. The review also
                                                                                                                                                        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
exists to prevent this, such as the Code on          cost savings.26                                            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              c. Engage early with NHS staff,
account the result of a predictive genetic test.25
                                                     actively involved in setting the rules and                 including senior trust leaders
Legislative mechanisms such as this can be
                                                     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
service planning, can be less obvious, creating      for the scrutiny of requests for access to NHS                                                         Innovation Gateway.30
a challenge when engaging with the public.           Scotland originated data to benefit the citizens        b. Develop a communications
Some benefits from secondary uses of data may        of Scotland for purposes other than direct care.27         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                                                                                                                  best practice use of health data
                                                     to describe patient data and its uses can               c. Communicate more clearly how
unsuccessful. We need to better understand the                                                                  health data is used, by which              and, where appropriate, how and
                                                     be confusing, as evidenced by research
public’s view of these trade-offs even at the risk                                                              organisations and for what kinds of        when to seek consent for secondary
                                                     commissioned by Understanding Patient Data
of limiting the uses to which these data can                                                                    projects. For example, by improving        uses of health data.
                                                     who have published their own guidance on
be put.                                                                                                         the visibility and usability of NHS
                                                     terminology.28, 29 Terms such as “anonymised”
                                                     and “consent” can have different meanings in               Digital’s register of approved
We still don’t know what large segments of the
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
2. Data governance                                                                                        1. Explicit consent has been given by the
                                                                                                                                                              listed rather than consent, which in turn may
                                                                                                                                                              be subject to public challenge as exemptions
and legal frameworks                                                                                         data subject to processing for one or more
                                                                                                             specified purposes;
                                                                                                                                                              may be perceived as “loopholes” for using
                                                                                                                                                              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           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
       complex and creates a number of legal and        and “scientific research purposes” both           4. Processing is necessary for reasons of
                                                                                                                                                              for data processing is provided by the Data
       societal challenges.                             require a basis in UK or EU law.                     public interest in public health, such as
                                                                                                                                                              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
ensure that the health data of patients and the       While it might be possible to perform
                                                                                                             research purposes based on EU/UK laws            processing of special category data under
public is safeguarded. To improve the security        research using anonymised data, often the
                                                                                                             (which shall be proportionate to the aim         the public interest or scientific research
of healthcare data, the NDG recommended               anonymisation removes some, or a significant
                                                                                                             pursued, respect the essence of the right        exemptions.33 The European Data Protection
ten data security standards for all healthcare        part, of the value of that data. Many uses of
                                                                                                             to data protection and provide for suitable      Supervisor (EDPS) also notes in its preliminary
organisations to implement. This resulted in          health data involve mining big datasets to
                                                                                                             and specific measures to safeguard the           opinion on data protection and scientific
the Data Security and Protection Toolkit (DSPT),      obtain insights, whether regarding public health
                                                                                                             fundamental rights and the interests of          research34 that Exemption 5 above is “a new area
requiring all organisations that have access          more widely or in respect of specific diseases,
                                                                                                             the data subject).                               and requires adoption of EU or member state
to NHS patient data to use this online self-          targets, drug discovery or drug development.
                                                                                                                                                              law before the use of special categories of data
assessment tool to demonstrate their capability       For example, it is often necessary to know if      This legal framework may create a number of          for research purposes can be fully operational”,
in implementing the security standards.31             a disease outbreak is more prevalent in men        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

     R ECO M M E N DAT I O N S :

     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
     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

and infrastructure

                                                                                                               DXC Technology

                                                                                                               System C

      • Outside of primary care, there is a marked      • In recent years there have been positive
        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
      • 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.
        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
                                                       systems. While all providers have a patient
care, practice management software has been
                                                       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                                                                                                                                   ds
                                                       majority (79%) employed one of 21 different                                                                            or
health records (EHRs).39                                                                                                                                                    ec
                                                       commercially available systems, and 10% were

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
to enable a move to open, modern, cloud native         encounters every year, with international as
                                                                                                           Figure 1: Frequency of use of

architectures with consistent technical and            well as national benefit, where internationally-    health record systems by trusts
data standards.40 Nevertheless, local GP usage         established data coding and interoperability

                                                                                                           and distribution of health record
and data structure remain varied, existing             standards are used.39

                                                                                                                                                  In h
                                                                                                           systems in NHS England. Each LSOA
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
                                                       delaying the ability to move to the cloud,
Commissioning Groups (CCGs) must employ                                                                    trust patients from that LSOA most
                                                       holding data quality back. Cloud computing          frequently attended during the study
staff and still use Commissioning Support                                                                                                                        systems
                                                       allows large-scale, cost-efficient analysis of      period. LSOA, Lower Layer Super
Unit (CSU) resources to clean data for returns
                                                       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         R ECO M M E N DAT I O N S :
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.                  trusts to reach a high degree of
In recent years there have been positive                                                                      digital maturity by 2023, after
                                                   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
standards. NHS Digital is working to improve       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
and NHS Digital are working to encourage and       also have a major focus on data curation.55                cloud services, including who
enforce data and interoperability standards,                                                                  is responsible for what, who
holding providers to account for implementing                                                                 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
                                                                                                         3. Review the mechanisms for funding IT in the NHS.
combine and curate datasets.                       revenue to run a digitally safe environment.56           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 &                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
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