Are Most Patients Willing to Share Medical Data?

August 23, 2019

A new study surveyed 1,246 patients on whether they'd be willing to share electronic health records and biospecimens for research.

The majority of patients may be willing to share medical data and biospecimens for research, according to a new study in JAMA Network Open. However, researcher affiliation, design of consent forms, patient age, and health literacy may all affect data sharing decisions.

“The finding in this study that most patients were willing to share data from their electronic health records and biospecimens with researchers is reassuring,” wrote Jihoon Kim, MS, of US San Diego Health, University of California, San Diego. “Not only can biomedical research benefit from these resources but also a multi-site learning health care system can continuously advance as a result of data-driven improvements to processes and associated outcomes.”

The study included responses from 1,246 participants at two academic hospitals who were randomly assigned to complete one of four different surveys looking at willingness to share electronic health records and biospecimens: an opt-in simple survey that contained 18 categories, an opt-in detailed survey that contained 53 detailed items plus 6 data categories, an opt-out simple, and opt-out detailed. For opt-in surveys, participants were asked to select items they would be willing to share; for opt-out surveys, participants could also select items that would not be willing to share.

Only 3.7% of participants declined sharing information with their home institution and 67.1% indicated that would share all items with researchers at their home institution. About one-quarter (28.3%) of participants also indicated they would not share information with nonprofit institutions and almost one-half (47.4%) declined sharing information with for-profit institutions.

Only about one-quarter (23.4%) were willing to share all items with any researcher. In contrast, 3.7% of participants were not willing to share any items. About 72% of participants were willing to share only selectively, with a preference for sharing at their home institution and with non-profits.

“The finding that 955 participants (76.6%) made sharing choices to select at least 1 item that they did not want to share with a particular type of researcher is important when considering that this item might lead to a decision to decline sharing of the whole record if only an all-or-nothing option is available,” the researchers wrote. “This finding is important because the item to withhold may not be of relevance to a certain study, but the current all-or-nothing option, if chosen, would remove that patient’s data from all research studies.”

Participants aged older than 60 years or those deemed to have greater health literacy were more willing to share more items than their counterparts. Household income, education level, sex, perceived health status, race, and site were not associated with a higher rate of sharing.

In addition, sharing preferences were associated with whether the form was opt-in or opt-out, but not the detailed versus simple format. Participants were willing to share fewer items when they were assigned to the opt-in form.

In an editorial that accompanied the study Spencer Phillips Hey, PhD, of Brigham and Women’s Hospital, Harvard Medical School and the Harvard Center for Bioethics, wrote that the fact that a majority of participants were willing to share so much data is “an encouraging sign.”

However, they also drew attention to the 4% of participants who did not want to share any data, the 77% of participants who declined to share at least some of their data, and the reluctance to share data with for-profit entities.

“This suggests that most patients do indeed want some control in opting in or out of this enterprise and that transparency about who is involved in data sharing agreements will likely be key to promoting trust and maintaining patients’ willingness to share their data,” he wrote.

In addition, Hey stressed the need for development of ethical data sharing policies and informed consent for data sharing practices to help patients to be more fully aware of how data sharing works and can affect them for good or for ill.

“Nevertheless, the takeaways for the research enterprise are broadly encouraging. Most patients seemed to be comfortable sharing some of their health care data for the public good,” Hey wrote. “So long as this willingness or consent to share data is grounded in the patient’s understanding of the history, risks, and benefits of the practice, then the broad support observed in the study by Kim et al. seems to be a great sign for the health care community.”