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Health data must be used in the public interest

Access to anonymised health records could transform the treatment of disease, but only if it’s done ethically.

By Saira Ghafur and James O'Shaughnessy

For decades the NHS has collected routine data on millions of patients across the country. A health record contains details of illnesses, diseases, treatments, interventions and outcomes. Utilising health data better has the potential to improve clinical outcomes, service efficiency, research and development (R&D), and economic growth. Of these benefits, improved patient care is by far the most important.

The UK is well positioned to take advantage of healthcare data as an asset. We have a health service that is one of the most trusted institutions in the UK. There is a strong record of innovation in health and life sciences, and a growing technology industry supported by world-leading universities. Remarkable outcomes from greater data-sharing were seen first-hand in the response to the Covid-19 pandemic when, under emergency legislation, data was used to inform the public health response and accelerate the development of a successful vaccine. Importantly, this was achieved by bringing together all parts of the economy, not just the NHS.

While the public has become more receptive to sharing data since the pandemic, we must be realistic about the challenges that remain. Initiatives in this space need to be handled carefully to avoid undermining or even reversing these gains. Trust between citizens and the government is fragile, and impairing this trust can have significant consequences, as we have seen through the now indefinitely delayed GP Database for Planning & Research.

This attempt to force through data-sharing reforms without broad public engagement resulted in more than a million patients opting out of sharing their data. This is set against a backdrop of people becoming more aware of data issues, and scepticism around the use of data by private sector organisations increasing.

The widespread use of patient data for healthcare research and innovation cannot be achieved without reinforcing the trust that exists between the NHS and the public – it is indispensable to a successful UK health data strategy. Any data-sharing agreements made by NHS organisations must demonstrate real benefit for citizens and fully adhere to all legal, regulatory, privacy and security obligations. Get it right, and we can generate enormous value for patients, clinicians, taxpayers and the economy. Get it wrong, and the consequences are predictable  – the public will withdraw its support for these endeavours.

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In a bid to rebuild public trust, the NHS and the Department of Health and Social Care (DHSC) are making a significant investment in secure data environments (SDEs). This will also help to correct an extremely fragmented data ecosystem and ensure that better infrastructure is in place.

[See also: Pledge tracker: Is Rishi Sunak regretting his five promises?]

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SDEs are virtual platforms that store de-identified patient data securely, where researchers and NHS analysts can request access and conduct analysis within a safe space. No raw data can be extracted, and processed data which is extracted must go through strict review committees to ensure it is not identifiable. We are moving away from the approach of a lending library to one of a reference library.

This is a major step forward in creating trustworthy data sharing. However, SDEs are large and costly to create and run, and require many trained staff to provide what the NHS and partners need. They also still need to demonstrate that they will hold citizens interests’ paramount.

There is an emerging consensus that there has been chronic underinvestment in UK R&D over recent decades, which has been compounded by reduced productivity, regional inequalities and poor infrastructure. The UK, especially the NHS, has a patchy record when it comes to innovation; the UK is very good at providing a platform for clinical trials and early-stage applications of technology, but much worse at expanding the implementation of successful interventions. The government recently published an independent review on resolving structural weaknesses in the commercial clinical trial environment and has a longer-term ambition to support this.

Recently Emma Walmsley, CEO of GlaxoSmithKline, urged the Prime Minister to allow pharmaceutical companies better access to anonymised NHS data to help develop more effective treatments and boost innovation, and achieve the government’s ambition to become a “science superpower”. This requires the NHS to work collaboratively with commercial companies, be those pharmaceutical or tech, to ensure that the NHS is at the forefront of clinical innovation. The private sector needs reassurance that the public sector can create the right infrastructure and workforce, while the public sector needs reassurance that partnering with industry – still an uncomfortable thought for many – will be in the interests of citizens. Both sides must agree to fair terms when data is used to generate health, economic and financial gains, so that patients and taxpayers can benefit. NHS England has recently published guidance for NHS organisations operating in this space, but it lacks a bold vision despite growing interest and activity in the field.

To ensure that we create solid foundations in this complex arena, the public must be consulted effectively at all stages to understand where the red lines are before embedding data sharing into practice. This needs to happen prior to engaging in data-sharing partnerships, not after. Until now, the approach has primarily been to ask for forgiveness, rather than permission. Unless that changes then understandable public scepticism will scupper one of the UK’s most exciting health and economic opportunities.

[See also: Kevin Fenton: “Racism is a major public health challenge”]

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