Most patients open to sharing medical records for research—but transparency is key

Most patients are willing to share their medical data for research purposes, according to an Aug. 21 study published in JAMA Network Open, but transparency is key.

Among the 1,800 participants who were asked to complete a data sharing survey, nearly 70% said they would share information with their home institution, wrote co-author Lucila Ohno-Machado, MD, PhD, and colleagues. Of note, they added, a number of respondents said they only wanted to withhold a couple of pieces of information.

“These results are important because data from a single institution is often insufficient to achieve statistical significance in research findings,” Ohno-Machado, chair of the Department of Biomedical Informatics at UC San Diego Health, said in a prepared statement. “When sample sizes are small, it is unclear whether the research findings generalize to a larger population. Additionally, in alignment with the concept of personalized medicine, it is important to see whether it is possible to personalize privacy settings for sharing clinical data.”

Today’s laws and regulations don’t require healthcare institutions to comply with many standards when sharing patient medical records and biospecimens for research. The times are changing though: a September 2013 law mandates newly enrolled patients who need to sign a HIPAA authorization must grant permission for institutions to use their personal health information for research or secondary use. And while patients have the option to withhold any part of their medical record, they do not have an option to pick and choose what they don’t want to share.

Ohno-Machado and colleagues administered their survey across two academic hospitals from May 2017, to September 31, 2018. Patients were first randomized into 1 of 4 options with different layout and formats indicating sharing preferences: opt-in simple, opt-in detailed, opt-out simple and opt-out detailed. Participants using the simple form could choose from 18 categories; those with the detailed forms could select from 59 items. Some of those options were demographic items like age, sex and race while others were more detailed such as lab results, imaging and biospecimens.

Overall, 1,246 patents complete the data sharing survey. Of that total, 67.1% said they would share all items and nearly 25% indicated they would share all items with all researchers, including other nonprofit or for-profit institutions. Less than 4% indicated they wouldn’t share any information, regardless of institution.

A key finding, according to the team, was that most respondents pointed to at least one item they did not want to share with a specific type of researchers (scientist at a for-profit, for example), but were open to sharing other items.

“This finding is important,” wrote the authors, “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.”

According to the researchers, a “tiered-permission” style system that allows patients to pick and choose which data items they share or what categories could be feasible and favorable to patients. But achieving a balance between transparency and timely research remains an obstacle.

“Institutions currently make decisions on sharing on behalf of all patients who do not explicitly decline sharing. It is possible that asking patients directly would increase the amount of data shared for research,” Ohno-Machado said. “On the other hand, it is also possible that some types of research would suffer from small sample sizes if patients consistently decline certain categories of items.”