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New principles to guide the future of data-driven health research: the HRA response

Last updated on 3 Dec 2018

As we come to an end of a year when the country has celebrated all that is great about 70 years of the NHS, it seems fitting that we should be looking ahead to the future of healthcare.

Central to this is data-driven technologies, an area the UK has a unique opportunity to lead, if we can find the right approach to the unparalleled access to patient data the NHS could offer.

That is what was at the focus of the Academy of Medical Sciences latest report, published last week.

JMThe report outlines principles that must be adopted so that patients can benefit from digital information about them being used in smarter, more co-ordinated ways to revolutionise healthcare and support life-saving research. It covers what the NHS needs to do, but also sets out actions for industry partners, including medical technology developers and regulators.

The underlying principle is that we must balance access to data with ensuring appropriate safeguards for its use. That was one of the key themes to emerge from a workshop I chaired earlier this year on New technologies that use patient data, reflecting on the public dialogue which was conducted to inform the development of the Academy’s principles.

There are many parties, including the Health Research Authority, who are interested in the potential benefit to patients and the wider health system in this area. The Secretary of State for Health and Social Care, Matt Hancock, has made it one of his top priorities, saying that he is passionate about the opportunities that new technology – used intelligently – present for the NHS. It’s also a priority for the wider government as part of the Life Sciences Sector Deal, because of the potential not only to improve patients’ lives, but also to stimulate economic growth.

It’s of interest too to patients, particularly as health technologies become increasingly visible and directly available to them rather than only through health professionals. The report mentions intelligent monitoring devices including smart insulin pumps for diabetes, and houses designed with smart technology to monitor and support dementia patients and their carers. The internet of things has placed smart technology within the reach of most of us in our homes (‘Alexa, what are the symptoms of the flu?’) and there is a real risk of a loss of public confidence in the health system if crucial opportunities to apply this innovation within the NHS are held back.

Again though, the key is balance. Patients need to have confidence that technology is addressing issues that matter to them, whether that’s being done by the NHS alone, or in partnership with industry. Underpinning everything should be a commitment to the ethical and legal use of healthcare data.

The principles published by the Academy of Medical Sciences reflect this, and the HRA strongly supports these being taken forward as part of new guidance to help clarify the ethical and legal use of patient data in this area.

The next step is for the report to be followed by action, and we must work quickly to ensure our systems and processes change to support, rather than stymie, research and developments. The Academy of Medical Sciences will now turn its focus to working with others to look at how the principles set out in its report can be embedded into clinical practice and the wider research community, and I’m pleased that I’ll be able to contribute to that, alongside HRA’s Director of Policy Juliet Tizzard. We still have some way to go, but the work done this year feels like it could stand out as a landmark when we reflect on 80 years of the NHS in 2028.

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