New report calls for cultural shift in use of patient data by NHS and health technology companies

The report, published by the Academy of Medical Sciences, outlines principles that must be adopted by the NHS and medical industry so that digital information about patients can be used in smarter, more joined-up ways to revolutionise healthcare and support life-saving research.

'We are already seeing digital technologies that empower patients to manage their own health, for example by monitoring their own condition at home,' said Professor Lionel Tarassenko, Head of the Department of Engineering Science at the University of Oxford and a member of the report’s steering committee.

'Technology will only evolve and get more sophisticated to have a bigger impact on healthcare in the NHS in the next ten years,' Professor Tarassenko added.

Putting into action the set of principles recommended in the Academy’s report will enable organisations, including the NHS and medical technology companies, to respect and protect the privacy, rights and choices of patients and the public. The principles will help provide safeguards to support patient data being used in ways that are fair, and will enable all NHS patients to benefit from the use of health technologies using patient data.

Health technologies that are becoming increasingly important include wearable devices, mobile phone apps and intelligent monitoring devices. Smart insulin pumps for diabetes, artificial intelligence assisted pregnancy ultrasound scans, and houses designed with smart technology to monitor and support dementia patients and their carers, are examples given in the report where patient data are already being used to develop health technologies.

The report highlights the potential of the NHS to become a world leader in the use of patient data for technologies to improve healthcare, and emphasises that patients and the public expect the NHS to keep control of patient data. It calls for action to be taken so the NHS can evolve into a system that learns from itself, feeding back digital information about patients and using technology to support, not replace, face-to-face healthcare. The NHS must also share in the wider benefits of contributing patient data for these new technologies.

Professor Tarassenko said: 'If we are going to reap the benefits of these advances, we must act now. We need to see a widespread increase in digital health literacy throughout the NHS, with the full involvement of patients and the public. We also need to think carefully how we regulate and evaluate digital health products, especially when they include artificial intelligence, so that healthcare professionals and patients know that they are safe and reliable, and improve patient outcomes.'

The group based their discussions on a programme of dialogue commissioned from Ipsos MORI that explored public, patient and healthcare professionals’ views on the future use of technologies that use patient data. Workshops were held in Cardiff, Sheffield and London, involving around 100 people from a wide range of backgrounds, some with long- and short-term mental and physical health conditions, and healthcare professionals including GPs, nurses, paramedics and hospital consultants. The Ipsos MORI report of these workshops is also published today.

A follow-up meeting gave an opportunity for the NHS, regulators, funders, policy makers, data and medical technology companies and the pharmaceutical industry to contribute their views. This Academy policy project was partly funded by a grant from the UK Department for Business, Energy and Industrial Strategy.

Professor Sir Robert Lechler PMedSci, President of the Academy of Medical Sciences, added: 'This report is based on high-quality, in depth conversations with members of the public, hospital doctors, GPs and nurses. We are calling for the NHS, regulators, industry and other key stakeholders to work together to adopt the principles set out in this report to make sure that patient data is used in a fair, transparent, safe and effective way.'

The report can be read in full online, or find out more about Professor Lionel Tarassenko’s work.