The Institute of Global Health Innovation at Imperial College London has published a report called “NHS data: Maximising its impact on the health and wealth of the United Kingdom” (the “Report”).[1] The Report begins from the premise that the knowledge gleaned from the combination of patient health data and “big data” technologies has incredible potential for “transformative …impact” on patient health, scientific advancement and the UK’s economy. However, the Report argues that the current efforts of scientists, medical professionals and the UK government to develop the UK’s capacities are not sufficiently coordinated to maximise that potential. To address this, the Report presents a single, high-level, strategic framework for the collection, governance and use of patient health data in the NHS.

The Report builds its analysis on three main principles:

• patients must feel a sense of agency and control over what happens to their data;
• health data must always be used in a way that is safe, secure, legal and ethical; and
• there must be a concerted effort to fairly distribute benefits to people across the UK.

Areas of Action

The Report identifies six “areas of action”, where work is needed to maximise the impact of health data.

1. Public Opinion and Engagement. If the public feel that their health data is being gathered and shared in ways they did not consent to, they may lose trust in the NHS. The Report recommends that the NHS engage with the public to determine what uses of health data are publicly acceptable, and under what circumstances.
2. Data Governance and Legal Frameworks. Health data in the NHS is subject to several, overlapping regulatory frameworks (e.g. the NHS Act 2006 and the Data Protection Act 2018) and the law is not always clear on key matters such as the required standards for anonymising health data in different circumstances, or the permissibility of secondary uses of the data. The Report recommends that the UK’s Information Commissioner produce coherent guidance for handling health data.
3. Data Quality and Infrastructure. There are numerous different health data gathering systems in use across the NHS. Not all of these are interoperable, many are inefficient, and some are still paper-based. To improve data quality and usability, the Report recommends that the NHS invests in uniform systems that allow real-time health data to be captured at source, and shared seamlessly. 
4. Capabilities. Implementing the Report’s vision for health data in the NHS will require much more human expertise in digital systems than the NHS currently has. The Report recommends a workforce of trained clinician informaticists, who are rewarded on par with the private sector.
5. Investment. Achieving the required improvements in data quality, infrastructure and capabilities will require significant investment, in the order of billions of pounds. The Report recommends that the government increases spending on digital health, develops a strategy to attract private investment in innovation, and determines the areas of highest potential impact.
6. Value Sharing. The Report argues that NHS health data should be made available throughout the NHS, to the scientific community and to the private sector. The Report outlines ten different compensation models that the NHS could choose between when sharing health data with other actors. Income generated through data sharing arrangements could drive further improvements in care quality and delivery.

The Future of NHS Health Data

The Report, and its accompanying article, are careful to emphasise that, of the six areas of action, the first is the most pressing. The Report warns that if the UK population is not engaged in open and transparent debate on how their health data is gathered, used, and shared, there is a risk that the NHS will lose public trust and support, and the enormous potential of health data to improve the health (and wealth) of the UK will not be realised.

What’s needed now, the Report concludes, is for stakeholders from the public to clinicians and from academia to industry, NHS, and government to take part in a national conversation around the issues and opportunities identified across the six areas of action, and to agree on next steps.

[1] Ghafur S, Fontana G, Halligan J, O’Shaughnessy J, Darzi A. NHS data: Maximising its impact on the health and wealth of the United Kingdom. Imperial College London (2020) doi: 10.25561/76409