Tom Addison, Policy Manager, The Physiological Society
Attending various health and innovation conferences, both in Westminster and around Europe, as part of The Society’s project on lifelong health, one cannot help but be struck by the pervasiveness of “big data” as a powerful tool in the future to improve the health of individuals and society at large.
From the perspective of physiology, big data is indeed an attractive proposition for both research and patient care. It may be that in the not-too-distant future, researchers will be able to continuously monitor trial participants beyond the confines of the lab. New technology allows patients to collect and analyse their own health data, which has the potential to transform the way care is delivered. Big data also has a number of high-profile health-related supporters. Matt Hancock MP, Secretary of State for Health in the UK, used his first speech in the role to announce a £500m investment in “the roll-out of innovative technology aimed at improving care for patients and supporting staff to embrace technology-driven health and care”.1 George Freeman MP, former Minister for Life Sciences and former Chair of the Prime Minister’s Policy Board, recently spoke of his desire to see patients, charities and the NHS combine to create “patient portals” that include patient data that are visible to patients and can be sold to companies once charities have negotiated the terms of the deal. He pointed to Estonia as an example of where patient data is stored online and used to develop personalised healthcare such as exercise targets, expedited pharmacy prescription collections and screening the population for those most at risk of developing diseases such as breast cancer.2
The success of a data-driven health system and physiological interventions will rely on securing public trust that their data is being held securely and used responsibly. Neither governments, nor companies with the financial clout to be early adopters of big data, have a strong track record in this area. In the UK, the NHS launched “Care.Data” in 2013 with the aim of bringing together health and social care information from across the NHS to improve patient care, as well as enabling researchers to use anonymised data to develop new treatments. However, three years later it was cancelled because of concerns about the sharing of sensitive medical information with companies without patient knowledge or agreement. In the past 12 months alone, the NHS has blamed a coding error for 150,000 patients in England being involved in a data breach.
Indeed, the Estonia example gives us a clue as to the long-term education and normalisation that would be required for acceptable and successful adoption of data analysis in health. Rapid implementation of a digital government in Estonia began in the 1990s with electronic banking, a digital tax system and related digital services all going digital first. By comparison, only 64% of UK customers used online banking in 2016.3 Those involved with the digitisation of Estonia’s data have recognised that this gradual move towards online services has made Estonians more receptive to the sharing of their data for “patient empowerment and personalised health” but have also described the initial steps as “a blind leap of faith”.4
Jeremy Farrar, Director of Wellcome Trust, has said “We will only unlock the immense value of patient data if we have open and honest discussions about how and why data can be used for care and research, what’s allowed and not allowed, and how personal information is safeguarded.”
Individual NHS Trusts are now working to improve sharing of data at their local level with the intention of learning the lessons from Care.Data and building trust with patients and communities. The UK’s move to digital health has sufficient examples from elsewhere to make labelling it “blind” unfair but “faith” remains in short supply.