Enhancing the UK health data environment

The UK health data environment offers much promise to both UK-based and global researchers. Despite this the UK’s promise does not yet translate into reality, and the current value of the UK’s health data tends to be overestimated by policymakers.

Indeed, the difficulties of accessing UK health data have led to the formation of specialist private companies – such as Sensyne Health (see Box 13).

The Government has recognised the need to improve the system. The importance of the sector to the UK was ] captured in the in the Life Sciences Vision, the previous Life Sciences Industrial Strategy, and DHSC’s Data Saves Lives Strategy, and associated funding has enabled the establishment of HDR UK and the triple structure of the Health Data Research Alliance, Health Data Research Hubs and the infrastructure for the Health Data Research Innovation Gateway (see Box 14).

The biopharmaceutical industry leads the global undertaking of discovering new medicines, developing them and delivering them to patients.

Through our members in the UK, we support the ambition of the Government to increase the proportion of R&D spending towards 2.4% of GDP.

Success in unlocking the promise of UK health data can help attract more of the global R&D effort to the UK, particularly in the area of clinical development: investment in clinical trials is already estimated to bring £192 million worth of value to patients within the NHS,[74] as well as providing valuable experience for the healthcare professionals involved.

This will help to ensure that the NHS is ready to make the most of new medicines as and when they become available.

ABPI’s “Unlocking the promise of UK Health Data” report sets out five priority action areas where shared aims should lead to further collaboration with government agencies, perhaps under memoranda of understanding or sector-deal type projects in order to maintain progress in improving the management and accessibility of UK health data:

  1. Reduce fragmentation in the UK health data landscape
  2. Increase efficiency of data access processes
  3. Enable design, feasibility, recruitment and conduct of all clinical trials
  4. Enhance data transparency
  5. Harness health data to demonstrate the value of interventions

While focusing on these areas, industry is also committed to work with Government and all stakeholders to ensure that consistently high standards of governance are established and maintained. Looking to the future, it will be also be important to work to ensure the availability of a data science equipped workforce, developing and attracting the right skills into the life sciences sector.

Together, we can unlock the promise of UK health data to support research that will improve patient outcomes, enhance the efficiency of the NHS and support the development of new medicines.

Box 13: Sensyne Health

Sensyne Health is a unique partnership (initiated in February 2017) with a small number of NHS trusts which develops digital health products and enables companies to analyse anonymised data. The data remains in NHS ownership.[75]

Each analysis of anonymised patient data is preapproved for each programme on a case-by-case basis by the relevant NHS trusts. This is to ensure that the purpose of the anonymisation and the proposed analysis are subject to appropriate ethical oversight and information governance, including conformance with NHS principles, UK data protection law and applicable regulatory guidance.[76]

In August 2018 Sensyne Health floated on the London Stock Exchange.[75]

Box 14: HDR UK and the components of data access

1 The UK Health Data Research Alliance The Alliance was established in December 2018 to bring together leading healthcare and research organisations and health leaders to establish best practice for the ethical use of UK health data at scale.

2 Seven Health Data Research Hubs In September 2019, the following Hubs were announced:

3 UK Health Data Research Innovation Gateway The purpose of the Innovation Gateway is to provide services to the Hubs, and others, so that data from the Alliance can be discovered and accessed safely and responsibly. The first phase went live in January 2020, includes a catalogue of metadata to facilitate discovery of relevant datasets.

Name Focus Aim
DATA CAN Cancer Enable UK-wide high-quality cancer data
access to improve care, diagnosis and research.
INSIGHT Eye health Use data, analytics and AI to develop insights into
eye disease and wider health.
Gut Reaction Inflammatory
bowel disease
Use data to better stratify Crohn’s Disease and
ulcerative colitis patient responses.
PIONEER Acute care Use linked data to enable companies to develop
acute care products and services.
NHS Digital Clinical trials Increase opportunities for patients to participate in clinical trials.
BREATHE Respiratory Improve the lives of people with conditions such as asthma and COPD.
Discover-NOW Real-world data Understand, develop treatments and prevent long-term
conditions such as T2 diabetes.