A radical culture change in the NHS, and across the health data and medical technology community, is needed to make sure that the NHS can deliver the benefits of new health technologies that use patient data for care, and to retain public trust, says a new report from the Academy of Medical Sciences, published 29 November 2018.
The report outlines principles that must be adopted by the NHS and industry, including medical technology developers and regulators, so that patients can benefit from digital information about them being used in smarter, more joined-up ways to revolutionise healthcare and support life-saving research.
Putting into action the set of principles set out 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 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.
A steering group of 12 experts, including leading clinical, biomedical and social scientists, legal, ethical and technology specialists, oversaw the development of the principles. 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.