Opening the Can of Worms: What the Public Says About Sharing Healthcare Data

UK researchers have just published a novel study on the hopes and fears of ordinary citizens about how their healthcare data will be used.

Last year, the Trump administration’s push for hospitals to publicly share pricing data and for patients to have more control of their own healthcare information prompted lively debates about who “owns” the data, whether it should be shared and when.

Benefits of data sharing include improved care coordination, the ability to find outlying areas of waste to reduce costs, and the opportunity to improve quality and safety. These are necessarily balanced against the risks, which include breaches that have happened with increased frequency, involving millions of patient records.

In the United States, armies of lobbyists and experts weighed in as the 2020 regulations were discussed. But in the year before the COVID-19 pandemic hit, researchers in the United Kingdom—where data debates are no less heated—tried a different approach to gain insights from ordinary citizens, whom they say are often not consulted in these discussions.

Calling their installation, the “Can of Worms,” the group from the Institute for Global Health Innovation created a public engagement installation at a London hospital that featured a series of cans that each contained an audio recording; each “story” would present the user with a data-sharing scenario in one of seven different areas: diagnosis, individual care, planning, policy, social services, treatment and prevention, and understanding disease. The researchers gathered demographic information and then asked the participants questions about the stories they had heard.

“Topics included international data sharing among patients with chronic diseases, genomic analysis, and data-powered predictive algorithms,” the authors wrote. “The fictional stories were developed by researchers based on anecdotal evidence of risks and benefits of data sharing to represent a balanced view.”

The authors, who report that 352 people took part in the qualitative study between November 2018 and June 2019, published their results this week in the Journal of Medical Internet Research. Their title: Opening a "Can of Worms" to Explore the Public's Hopes and Fears About Health Care Data Sharing: Qualitative Study.

Hopes and Fears

Participants have a mixed view of using health care data, which emerged in their responses. The researchers found six themes of hope, starting with the idea that having better access and ownership of their data would lead to more empowerment over their own care.

Participants also said they hoped for increased interoperability and collaboration, which they expressed as an interest in seeing the health system become less fragmented and more unified. Other “hopes” included the generation of evidence for better and safer care, improved timeliness and efficiency, the delivery of more personalized care, and greater equality of care.

The participants also identified five fears, the greatest of which was inadequate security and exploitation—which did not surprise the researchers, because the May 2017 WannaCry incident was still fresh on the minds of UK residents. Other fears were that data were inaccurate, that data could be used to discriminate against patients, and that widespread sharing of data would negatively affect the doctor-patient relationship.

While the study was small, the authors said it shed new light on public fears that widespread data use in healthcare could expand, rather than reduce, health disparities—and that it could make care less patient-centered. If health system designers are to rely on patient data to engineer solutions, they write, talking to those who are doing the data-sharing is essential.

“Incorporating the knowledge generated and focusing on co-designing solutions to tackle these concerns is critical to engage the public as active contributors and to fully leverage the potential of health care data use,” they wrote.