Radical culture change needed to keep trust in health data

A new report suggests that a radical culture change is needed across the NHS to ensure that it can deliver the benefits of new health technologies that use patient data for care and maintain public trust.

The Academy of Medical Sciences outlines principles that must be adopted by the NHS and medical technology industry to ensure 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.

Highlighting the potential of the NHS to become a world leader in the use of patient data for technologies to improve healthcare, the report emphasises that patients and the public expect the NHS to keep control of patient data, pressing that action must 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’.

With increasing use of wearable devices, mobile phone apps and intelligent monitoring devices, health technologies are already using patient data to provide more focused care. Based on five core themes, the Academy of Medical Sciences principles for data-driven technologies include: respecting and protecting the privacy, rights and choices of patients and the public; maintaining trustworthiness in the responsible and effective stewardship of patient data within the NHS; incorporating mechanisms for evaluation and regulation that build public understanding, confidence and trust in these technologies; supporting clearly defined purposes that uphold the social values of the NHS; and including patients and the public as active and meaningful partners.

A steering group of 12 experts, including leading clinical, biomedical and social scientists, legal, ethical and technology specialists, oversaw the development of the principles.

Carol Dezateux, chair of report Steering Group, said: “Health technologies that use patient data have huge potential to improve our health and wellbeing. We are already seeing the development of wearable monitors linked to automated treatment that are revolutionising the lives of patients with long-term conditions such as diabetes. Our workshops with the public emphasised that they want to see the NHS deliver on the potential of data-driven technologies, giving better and safer health care for all.

“The Academy report builds on what the patients and the public have told us matters most to them. By putting the public’s expectations at the centre of the use of data-driven technologies, the NHS, scientists, researchers and developers will be able to work together to deliver maximum health benefits for all, while keeping public trust.”