Public should have a say on how medical data is used, report says

Patients and the general public must be given a say on how their data is used by the NHS, a new report says.

The research from Imperial College London warns that if the public is not “deeply involved” in setting goals and limits on the use of data, it could lose trust in the NHS.

The report argues that the better use of long-term health data already held by the NHS, for example, electronic health records and test results, could be transformative for healthcare in the UK.

It highlights a recent study which indicated that an artificial intelligence algorithm, which was trained using patient data, was more accurate than human doctors in some cases in picking up breast cancer in mammograms.

However, it calls for proper transparency and public consent as well as more investment in the NHS and its IT systems to ensure high data collection standards are met.

It says new infrastructure, education and training initiatives should be introduced, alongside the employment of skilled data experts.

The research also calls for the Information Commissioner’s Office, the UK’s data watchdog, to issue guidance about best practice on data sharing in the NHS.

Professor Ara Darzi, report author and co-director of Imperial’s Institute of Global Health Innovation (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.”

Fellow report author and IGHI Visiting Professor Lord O’Shaughnessy added: “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.”