Data sharing: keeping patients on board
Authors: Geoff Watts
Journal: The Lancet Digital Health (2019)

When Health Data Research UK recently announced the imminent launch of a new initiative, it titled the press release “Pioneering data research centres to enable cutting-edge research and innovation”. Contrast that upbeat tone with The Guardian newspaper's headline reporting the same development: “Privacy fears as millions of NHS patients' records go to ‘data hubs’”. The difference in emphasis could hardly be starker: the researchers eager to point to the benefits; the newspaper, mindful of the suspicions of some of its readership, drawing attention to the risks. As a 2018 Academy of Medical Sciences report noted, “New data-driven technologies…are set to transform the way that health and social care is delivered”. By harnessing the breadth and depth of patient data, it continued, these technologies have the potential “to support a healthier future for patients and the public”. But what if public suspicions about the use of medical records should grow? The raw material of any data-driven technology—the clue is in the name—are data, derived mainly from patients who have consented that information about them and their health can be used for research and planning. Can researchers count on patients to continue doing so? “There is a small percentage of the population that feel deeply suspicious and will never share their data for any purpose”, says Carol Dezateux, speaking to The Lancet Digital Health. Professor of Clinical Epidemiology and Health Data Science at Queen Mary University London, Dezateux chaired the working party that wrote the Academy's report. The universality of the UK National Health Service (NHS) lends itself to all sorts of data technology projects and makes it an ideal test bed for many of them. It also enjoys a high level of trust among users, who are regularly reminded of their right to opt out of allowing their health data to be shared outside the NHS for purposes other their own direct care. Reasons for opting out include suspicion that data will be used for commercial purposes, scepticism about the supposed benefits of data sharing, fear of being disadvantaged or discriminated against in some way, and little confidence in data security. In practice—and in spite of repeated press stories of data breaches, including a few in health care itself—fewer than 3% of patients have chosen to opt out. This low figure might appear acceptable. But opting out is not a random process. People with sexual health issues and other conditions that might be considered particularly sensitive can be more inclined to withhold consent. “And you're also more likely to do so if you are older”, David Maguire, a senior policy analyst with the King's Fund, tells The Lancet Digital Health. The prevalence of, for example, a particular age-related condition might be underestimated. “If you wind up in a situation where opt outs are concentrated in particular demographics or those with particular health conditions, planning…can be difficult.” Openness and transparency on the part of data harvesters are generally agreed to maximise the chances that patients will consent to share their health information. The Academy report spells out the responsibilities of data collectors and users in one of five actionable principles: “Respect and protect the privacy, rights and choices of patients and the public.” As the report goes on to comment, “patients, the public, and health-care professionals are supportive of technologies where they have demonstrable benefits to patients or the health and social care system”. Dezateux believes that awareness of such uses can foster a climate sympathetic to data technology more generally. As she says, “If someone comes into casualty here [at the Royal London Hospital] and the doctor wants to know what medicines they're on, that doctor, with the patient's consent, can press a button on the screen and see a list of the medicines prescribed by the [general practitioner].” This, she argues, builds trust. If it's clear how data sharing can benefit the individual, a valuable step will have been taken in the attempt to build confidence in a wider use of health information to benefit the whole community. Besides the many arguments about benefit versus risk, there is an obvious practicality: the task of informing patients about data technologies and explaining how their success depends on the sharing of information. To this end, the UK organisation Understanding Patient Data (UPD) has been set up to “explain how and why data can be used for care and research, what's allowed and what's not, and how personal information is kept safe”. UPD has benefited from the experience of the wider scientific community, which, years ago, launched an initiative known by its initialism PUS: the public understanding of science. The optimistic assumption had long been that growing suspicions about science and all its works would melt away once the public understood more completely what the scientists were up to. Unfortunately, not everyone is as enamoured of science as those who do it; in some cases—genetic manipulation being an obvious example—the more that people learned of what scientists were doing, the less they liked it. Public understanding was obliged to morph into public engagement, with its implicit acceptance of dialogue. As UPD's leader Natalie Banner tells The Lancet Digital Health, “Most public attitude research suggests that if people have the opportunity to ask questions and get straightforward answers, they're more likely to be supportive”. UPD itself follows the engagement model and, while keen to see people sharing their data, moderates its advocacy. “We try not to persuade people to release their data”, says Banner. “Our aim is to inform them…We talk about risks as well as benefits.” This, she adds, shows UPD's independence and reinforces its role as a source of objective information. UPD does not have the resources needed to provide training for those engaged in seeking permission to share data, but offers practical guidance through its website. As the website points out, even the vocabulary of data and its handling can be confusing. “An important part of improving conversations about patient data is getting the words right, using words that are accurate but also accessible and meaningful.” Research commissioned by UPD has shown, for example, that the word “data” makes people think about numbers and codes. The word “information” has connotations of something broader. Data sharing schemes have, in the main, been professionally driven. The US public-private collaboration Sync for Science puts more emphasis on the initiative of individual patients. Its aim is to arrange for patients to be able donate their electronic health records, simply and safely, to participating research programmes. Self-selection carries the obvious risk of generating skewed data, but in a country without a national health system able to access nationally accumulated data, this approach makes sense. The European Patients Forum, a body run by the European Union, has also begun to consider the opportunities offered by data sharing. Its Data Saves Lives project aims to study the challenges as well as the potential benefits. It is seeking to create a health data community to discuss ideas and data policy not only at a national but also at a pan-European level. As with the UK's UPD, it grasps the importance of developing an appropriate lay language with which to engage patients and citizens. It is sometimes suggested that data-driven health technologies and the concerns they raise are relevant only to the world's richer and more industrial countries. An influential body contesting such a view is Wellcome. In June, it announced a 5-year £75 million programme of spending on data for science and health. The programme has two ambitions: to explore ways of motivating health-care professionals and others to make more innovative uses of medical and health information, and to build people's trust in and understanding of the systems set up to do so. The latter will include an exploration of public attitudes to data. Wellcome wants to find out how far methods developed in the UK for enhancing trust and understanding are applicable or adaptable to the needs and circumstances of other countries - and not only high income ones. “Currently you see datasets in lower-income and middle-income countries being hoovered up and taken away to be used [in high income countries] rather than giving benefit locally”, James Thomas, Wellcome's chief technology officer, tells The Lancet Digital Health. “That's not acceptable.” It is their data, he adds, and they should be empowered to use open-source tools to exploit it for their own benefit. The details are still to be decided, but Wellcome is planning to set up data hubs based in southern and eastern Africa and in India. Once established, a familiarity with the principles of data handling and use can spread and inspire. In Tanzania, the Better Immunisation Data initiative—with the slogan “better data, better immunisation, better health”—has set up a system of electronic immunisation registries, with bar coding to keep track of which patients have received what. Prompted to apply these principles to more general medical records, a worker in one local dispensary noticed a spike in urinary tract infections among female patients. As a consequence of detecting this hitherto unnoticed increase, the dispensary expanded its educational outreach work to address the problem, thus illustrating how such systems can benefit local communities. Over the years, and with varying degrees of reluctance or enthusiasm, research institutions have adapted to changing norms in public understanding and behaviour, whether ethical, statistical, or social. If today's data-driven health technologists are to thrive and maximise their contribution, they too will need to align themselves with this evolution. 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