Patients must decide how their medical data is used, says white paper


A doctor talking to a female patient

Patients and the public must be involved in the development of strategies designed to maximise the benefits of NHS data, says a new report.

Failing to engage the UK population in an open and transparent debate on how their health data is used risks losing their trust in the NHS.

And without public buy-in, the enormous potential of this data to improve the health and wealth of the UK cannot be realised, warns the white paper launched today (Wednesday) from Imperial College London.

"We’re calling for the public to be actively engaged and involved in decisions regarding the use of their data. They must help decide what is an acceptable use of it." Lord Darzi Report author

The NHS owns long-term health data for the majority of the UK population and this unique asset is poised to be transformative for health. The knowledge gleaned from it could dramatically improve health and care and help accelerate the development of treatments for a range of conditions, including precision medicine for cancer and rare diseases. The NHS health data could also generate significant income for the health system, driving further improvements in care quality and delivery.

This potential is already starting to be demonstrated, for example through recently-published research which showed how artificial intelligence algorithms trained on big data were, in some instances, more accurate than doctors in picking up breast cancer in mammograms.

But if the public are not deeply involved in setting the vision, goals and limits of the use of their data, they may withdraw their support for data sharing initiatives. Yet these initiatives could ultimately benefit patients, taxpayers and the economy, for example by supporting world-leading research, argue the report authors.

Learning from failures

There are already a number of instances where a lack of transparency and consent led to public objections, which were a significant factor in the failure of data sharing programmes designed to benefit patients, such as Care.Data, which aimed to collect anonymised data from GP surgeries and make this available for research, but required patients to opt out.

Led by Imperial’s Institute of Global Health Innovation (IGHI), the new report also highlights the substantial investment needed in the NHS to unlock the potential of its health data assets, likely in the order of billions of pounds.

Chronic underfunding of IT systems and the lack of standard processes for capturing health data has led to huge variation in quality. This means a major overhaul to the way that data is collected, stored and shared is needed to make NHS data useful for research. This will require new infrastructure, education and training initiatives, and the employment of skilled data experts.

But the authors say it should be possible to pay back the initial investment by enabling the acceleration of progress in medicine, and improving the population’s health and care.

In addition, by creating an attractive, high-quality health dataset unlike any other in the world, the investment could generate billions for the UK economy, and create jobs - by acting as a springboard for the development of new treatments and technologies in healthcare.

Putting patients first

The paper’s recommendations include:

  • The urgent need for the Information Commissioner’s Office to issue guidance about best practice on data sharing in the NHS
  • Establishing clear rules for data access by research organisations and the private sector, following a transparent public debate
  • Developing policies, tools and partnerships to mine the data in areas likely to deliver the most benefit for patients and the NHS
  • Recruiting and funding talented data scientists and engineers
  • Establishing government-funded initiatives to improve data quality.

Professor Ara Darzi, report author and co-director of IGHI, said: “We hope this report spurs long overdue conversations on how the health and wealth of the UK can benefit from the proper use of its valuable data asset. Public support will be crucial or the NHS risks losing support and trust, which is why we’re calling for the public to be actively engaged and involved in decisions regarding the use of their data. They must help decide what is an acceptable use of it.”

Based on extensive literature review and interviews with representatives from government, the NHS, academia and data privacy organisations, the paper highlights a number of areas of action to address NHS data quality, governance and infrastructure issues which currently represent a barrier to the effective use of the data.

Protecting personal data

The authors argue the NHS should receive a fair share of any financial gains made by the use of its data, and have proposed a number of ways that it could generate an equitable return, highlighting the risks and benefits.
The paper also calls for public engagement initiatives to understand people’s views on the use of health data for secondary purposes (such as research), which should be used to develop a national communications strategy on the use of health data.

Lord O’Shaughnessy, report author and IGHI Visiting Professor, said: "Maximising the potential of the UK's health data can deliver major benefits for patients and taxpayers, but achieving this requires a comprehensive strategy rather than piecemeal actions.

"Most urgently, the Government need to get patients involved in designing their strategy. While the NHS is highly trusted when it comes to protecting personal data, some recent examples of public-private data-sharing risk eroding that trust. Establishing a better understanding of what the public will and won't accept - and giving them more control over the process - is long overdue."

Dr Saira Ghafur, author and IGHI’s Digital Health Lead, said: “The NHS has some of the most comprehensive patient data sets in the world. If used in the right way, these data could have a significant impact on the quality and sustainability of care, and the potential to generate financial benefit for the NHS. To do this, the NHS must demonstrate trustworthiness and transparency, and ensure when sharing data there is significant potential to benefit patients, along with upholding privacy, ethics and security standards.”


Justine Alford

Justine Alford
Institute of Global Health Innovation

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