Introduction to health data

Over the last thirty years or so, advances in digital technology have enabled exponential growth in the amount of data we can collect, store, manage, analyse and share.

At every contact between a patient and the NHS,
wherever it happens, information is generated. If this
data could be systematically collected, stored and
linked for each patient across the NHS in a way that
supports straightforward access and analysis, the
UK would have a unique opportunity to interrogate
large-scale, detailed, longitudinal datasets.
The potential of research based upon health data
at this scale (see Box 1) to help advance our
understanding of disease, improve the way we
manage patients and save lives is well recognised.

The biopharmaceutical industry recognises
the potential of harnessing UK health data
combined with advanced analytics to achieve
three main goals:

  • To improve patient outcomes.
  • To increase the efficiency of the NHS.
  • To support the development of effective
    new treatments.

Box 1: Our definition of health data

‘Health data’ as used here includes all information that
could or should be included in every patient’s health
record (ideally held electronically) – for example,
clinical examinations, signs, symptoms and diagnostic
tests including scans and laboratory tests, treatments
prescribed, records of vaccination, procedures
undertaken and outcome measures, as well as similar
information generated during the conduct of a clinical
trial. Different subsets of this data across a group of
patients will be relevant to different research projects.

While the third is of particular interest to industry, all three goals are interlinked. Analysis of data linking patient outcomes to new approaches to treatment provides evidence to help refine optimal disease management guidelines and to support better clinical decision-making within the health service.

Understanding and implementing the optimal patient pathways for each disease, and at each stage of disease, can help health service leaders transform the quality of health and care services and reduce their cost, unlocking productivity benefits estimated to be worth up to £10 billion a year across the NHS in England.[1]

Analysis of data on patient responses provides improved understanding of how diseases begin and progress, and together with the stratification of patients through genomic analysis and biomarkers, supports the development of new interventions >to prevent, treat and perhaps cure disease.

The UK should be well placed to deliver on the promise of health data, given the perception of the NHS as a single organisation. While recent initiatives funded through the Industrial Strategy Challenge Fund via HDR UK, as well as NHS England’s plans to capture health data digitally at a population-wide level (see box 2) are designed to improve the utility of health data, management of healthcare (and hence collection of health data) is devolved across the UK and the theoretical benefits of the NHS for health data research are not yet reflected in the practical realities.

During 2019, the Medicines Discovery Catapult undertook three studies to understand the health data needs of the life sciences sector, supported by the ABPI, HDR UK and the industry’s Pistoia Alliance.

These studies (structured workshops, in-depth interviews and an online survey) enabled the identification of six themes around the potential use of health data:2

  • Breadth, depth and scale of health data.
  • The need for a single, easy-to-use route for access.
  • The need for high-quality data.
  • The need for expertise in areas such as artificial intelligence (AI) and analytics.
  • Public trust and the need to return benefit from analyses and use of data to the NHS and the public.
  • Cost-effectiveness of data access for all sizes of organisation.

The biopharmaceutical industry has been a pioneer in health data science, through the evolution of the design and conduct of clinical trials, and remains in the vanguard today.

Improved understanding of disease, and innovation in approaches to both diagnosis and treatment, inevitably lead to the development of new tests and outcome measures initially used in clinical trials that gradually become accepted as part of routine data collection in the NHS.

In addition, the industry has always been committed to the highest standards of governance of patient data collected in clinical trials, with decades of experience in ethical approval, patient consent and anonymisation of results reporting.

To make the most of UK health data, researchers, data custodians and others will need to be able to not only store, access and analyse data, but to do so under consistently high standards of governance in order to generate and maintain the trust of patients, the public and other stakeholders.

Looking to the future, the life sciences sector will need an increasingly large workforce trained in the ability to manage data within the governance requirements.

Recognising and welcoming that the UK Government as well as the leaders of the health services in England, Northern Ireland, Scotland and >Wales increasingly understand and are seeking to unlock the potential of the UK’s health data (see box 3), the ABPI has developed this report with our members, building on the themes identified in the Medicines Discovery Catapult studies,2 to update the industry’s perspectives on where improvements can be made – and to describe what support we and our members can offer to help make them happen.

The report sets out:

  1. A summary of the ways in which the biopharmaceutical industry uses health data to research and develop new medicines.
  2. Our members’ perspectives on the prerequisites for building trust amongst patients on the appropriate use of health data, informed by our experience of working with health data.
  3. The opportunities that the UK’s health data landscape offers to biopharmaceutical industry researchers, and the challenges that the industry currently faces in accessing and using health data for research in the UK.
  4. The ways in which we and our members propose to work in partnership with the UK Government and NHS leadership to address these challenges, recognising that better data offers shared benefits and that improving health data should therefore be a shared endeavour.

We gratefully acknowledge the contributions of our member companies in the process of compiling this report.

Box 2: NHS England’s ambitions on technology and digitally enabled care are set out in its Long Term Plan4

“[The Long Term Plan] will result in an NHS where digital
access to services is widespread. Where patients and
their carers can better manage their health and condition.

“Where clinicians can access and interact with patient
records and care plans wherever they are, with ready
access to decision support and AI, and without the
administrative hassle of today.

“Where predictive techniques support Local Integrated
Care Systems to plan and optimise care for their
populations. And where secure linked clinical, genomic
and other data support new medical breakthroughs and
consistent quality of care.”

Box 3: the scale of NHS data generation

During every contact between a patient and the NHS
(with general practitioners, nurses, emergency services,
hospital specialists etc) information – health data – is
generated. At the scale the NHS operates, the volume
of data routinely generated and collected is enormous.
For example, the NHS:

Sees one million patients every 36 hours.3

Provides 400 million GP and outpatient face-to-face
appointments each year.4

Undertakes 1.5 billion diagnostic tests each year.4

In addition, new technologies are being adopted which
facilitate the collection of a wider variety of data through
genetics and advanced imaging, and by patients
themselves through wearable devices.