Public perceptions on data sharing: key insights from the UK and the USA

Paper by Saira Ghafur, Jackie Van Dael, Melanie Leis and Ara Darzi, and Aziz Sheikh: “Data science and artificial intelligence (AI) have the potential to transform the delivery of health care. Health care as a sector, with all of the longitudinal data it holds on patients across their lifetimes, is positioned to take advantage of what data science and AI have to offer. The current COVID-19 pandemic has shown the benefits of sharing data globally to permit a data-driven response through rapid data collection, analysis, modelling, and timely reporting.

Despite its obvious advantages, data sharing is a controversial subject, with researchers and members of the public justifiably concerned about how and why health data are shared. The most common concern is privacy; even when data are (pseudo-)anonymised, there remains a risk that a malicious hacker could, using only a few datapoints, re-identify individuals. For many, it is often unclear whether the risks of data sharing outweigh the benefits.

A series of surveys over recent years indicate that the public holds a range of views about data sharing. Over the past few years, there have been several important data breaches and cyberattacks. This has resulted in patients and the public questioning the safety of their data, including the prospect or risk of their health data being shared with unauthorised third parties.

We surveyed people across the UK and the USA to examine public attitude towards data sharing, data access, and the use of AI in health care. These two countries were chosen as comparators as both are high-income countries that have had substantial national investments in health information technology (IT) with established track records of using data to support health-care planning, delivery, and research. The UK and USA, however, have sharply contrasting models of health-care delivery, making it interesting to observe if these differences affect public attitudes.

Willingness to share anonymised personal health information varied across receiving bodies (figure). The more commercial the purpose of the receiving institution (eg, for an insurance or tech company), the less often respondents were willing to share their anonymised personal health information in both the UK and the USA. Older respondents (≥35 years) in both countries were generally less likely to trust any organisation with their anonymised personal health information than younger respondents (<35 years)…

Despite the benefits of big data and technology in health care, our findings suggest that the rapid development of novel technologies has been received with concern. Growing commodification of patient data has increased awareness of the risks involved in data sharing. There is a need for public standards that secure regulation and transparency of data use and sharing and support patient understanding of how data are used and for what purposes….(More)”.