Digital health is an area of medicine that has seen huge acceleration and investment globally over the past decade—even more so during the COVID-19 pandemic, when reliance on digital and telehealth has been essential. With this growth in digital health, however, comes concern surrounding the use of digital patient data and the associated risks of cybersecurity breaches.

The UK Government has asked GPs in England to collate entire medical histories of patients for submission to NHS Digital from Sept 1, 2021. The request has come under close scrutiny from clinicians as the information shared will not be fully anonymised. Although the NHS provides information about how digital patient data might be used and potentially shared, the details are sparse. No exhaustive list and no parameters or guidelines on who will grant permission to access the data and how these highly sensitive data will be used are given. Whether the information will be updated to encompass concerns from clinicians and patients regarding the GP Data Programme has yet to be confirmed by the Government. Patients can opt out of sharing their records for the programme, but the deadline is June 23, 2021, and without a public campaign to inform patients of the data share, many will remain unaware of how their data might be made available to third parties without their consent.Digital health data contains valuable information that can be used in a responsible way to provide efficient and appropriately tailored services, and to improve public health. NHS Digital already has the Trusted Research Environment secure service, which de-identifies health data before providing information to approved researchers, utilised for COVID-19-related research. The Government could capitalise on the move to digital health, accelerated by the COVID-19 pandemic, but the lack of transparency and clarity about the use of patient data means that the current plan might be a missed opportunity to improve health systems and health outcomes.

NHS staff and health-care systems globally have demonstrated real innovation and ingenuity over the past year. For instance, virtual wards have been created across England in response to research suggesting that oxygen saturation at presentation to hospital is a marker of clinical outcomes for patients with COVID-19: patients were required to conduct oximetry at home and report results to their health-care provider via a developed pathway, enabling coordinated and consistent responses across the health-care system. Mortality in hospital was 6% for patients from the virtual ward compared with 20% for people who did not take part in the programme.

In Paris, France, the smartphone app Covidom has allowed people with mild-to-moderate COVID-19 to input their symptoms via a questionnaire for distant monitoring. The data are used to refer the individual for a consultation and to send emergency services to their home if necessary. The information gathered is made available to academic researchers upon request so that research on longer-term outcomes can be done. Individuals using the app can provide electronic consent when they are informed of the potential use of their anonymised data.Estonia is a country that has undergone a digital revolution. A range of public services is available online, where patients can access their own health records. Privacy and confidentiality of personal information and health-related data are guaranteed through a digital identity issued by the state, alongside a legally binding digital signature. Data only have to be inputted once and they cannot be stored in more than one place—meaning duplication is avoided and it is clear who is responsible for maintaining individuals' records. A highly secure data exchange platform, X-road, is used, so data sharing is visible and trackable at all times.Of course, even with the very best digital systems, cybersecurity is a risk made evident in recent COVID-related scams and cyberattacks on health systems. However, stakeholders in many countries are working together to combat the risks of cybercrime, identifying vulnerabilities in operating systems and coordinating responses to mitigate these. COVID-19 has inspired some innovative programmes in the UK and elsewhere, but enthusiasm about new digital platforms should not override the caution needed when collecting sensitive patient data. The UK Government must guarantee the safety of patient data and clarify how these data will be used to allow people to make informed decisions about the sharing of information from their health records.The ERS Presidential Summit “Digital respiratory medicine – realism vs futurism” was held on June 3–4, 2021 https://bit.ly/3znAdYnPublication HistoryIdentification

DOI: https://doi.org/10.1016/S2213-2600(21)00284-8

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