Future NHS: What if people controlled their own health data?

If people controlled their health data would it impede research and service improvement or enable patients to become more engaged with the NHS and ultimately improve care? Matthew Honeyman from the King's Fund explains the issues.

It’s 2021. There has been a steady trickle of stories about what happens to people’s health data. There’s no concrete evidence of harm in any of these stories, but a crisis of confidence has built up over time. One hospital has been the subject of a cyberattack, but it is not yet clear whether sensitive data has been stolen and deciphered.

Controversy about the use of health data is nothing new. Five years earlier in 2016, 2.2% of patients had exercised their right to opt out of data being shared beyond the NHS information centre after a botched attempt to link up information from patients’ GP records and hospital activity records.

They did this in a comparatively arduous way, by writing to their GP and registering their objections. All despite the fact that fewer than 0.25%of all patients in England had been given online access to the records held by their GP.

Now, in 2021, it’s much easier to view that data, suggest changes to it, share it. And it’s also much easier to opt out. It works like changing privacy settings on a social network.

At the peak of this crisis, something like one in five patients have opted out of sharing data with non-NHS bodies and one in ten opted out of sharing with NHS staff beyond their GP practice. Such is the erosion of trust and confidence in the NHS’s treatment of data.

To the people who use this data for research, it’s like the lights are slowly going out. Organisations studying the benefits of healthcare and how they’re distributed, who need to have representative data, are left struggling to work out whether their conclusions will be at all useful.

Researchers developing new treatments and technologies for use in health care are worried they have a biased picture of the patients they’re trying to develop better treatments for. Commissioners are left with a much less detailed picture of the health needs of their patients, eroding their ability to commission the most appropriate services, increasing the risk of waste and the risk of patients going without the care they need.

A more positive vision

But that’s just one scenario. The future doesn’t have to be so pessimistic. People having control of their health data can be part of a better health system.

In the next few years, what we understand to be ‘health data’ is likely to change significantly. At the moment, patients’ medical records sit with GPs, who control them. They contain notes of consultations, diagnoses and treatments, mainly added by doctors and NHS staff, going back for most people to when they were born.

But in future this data could sit alongside data generated by patients, made easy through cheaper and more ubiquitous digital technology.

It could be biological data streamed from wearable monitors to the NHS. Or fitness trackers logging activity against an exercise plan. Or mood and symptom-tracking apps helping people track their mental health and wellbeing. Or genome data. All linked to the person’s unique NHS record.

In a different world, easy-to-use privacy systems could enable a new wave of contributions to our knowledge of health and good-quality care. Citizens could allow access to their data for specific research projects.

Nesta’s NHS in 2030 project imagines a world where citizens are able to easily share their health data in a standardised format and in real time with studies operating on a large or a small scale, run by organisations of all types including communities of engaged people with particular conditions, building on the approach of existing organisations like PatientsLikeMe.

The next step will be making such large and varied datasets useful to people and the professionals in the health system. This will require the NHS to develop the skills to interpret the data on an individual level, develop and use new tools to analyse the vast quantities of data, and work on new research to understand what action people can take in response. Citizens will also need to be comfortable with how their data is used.

As health services gradually move towards commissioning for improving overall population health, rather than just delivering health care, much of this data, once properly understood, could become a reliable part of objective outcome measures for some conditions.

These measures could be designed to reward the organisations who help citizens to stay healthy, live well with long-term conditions, or deliver high-quality specialist care.

We can’t let the lights go out. Commissioners and providers need good-quality information about patients to develop better and fairer health services. Researchers need it to develop better treatments and technologies for use in health care. And charities, like The King’s Fund, need it to be reliable when trying to help improve the whole system.

That means building confidence that data won’t fall into the wrong hands, building trust by being even more transparent about what happens to health care data, how it’s processed and for what purposes. The system won’t get a second chance to do this.

  • Matthew Honeyman is a researcher in the policy team at The King’s Fund. He leads the Fund’s work on how digital technologies are used in health and care, and the policy environment around this.

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