Patients and the public must be involved in the development of strategies to maximise the benefits of NHS data, says a white paper from Imperial College London (ICL).
The document says failing to engage the UK population in an open and transparent debate on how their health data are used risks losing their trust in the NHS.
Without public buy-in, the enormous potential of these data to improve the health and wealth of the UK cannot be realised, warns the report.
This potential is already emerging. The report points to 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.
However, the document warns that if the public is 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. The authors say 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.
Professor Ara Darzi, report author and co-director of Institute of Global Health Innovation at ICL, 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.”
The patient must decide what is an acceptable use of their data, he said.
