A study published in JAMA Network Open has found that the majority of patients are happy for their medical data to be shared with researchers. These findings were based upon a survey that was conducted at two academic hospitals -- UC San Diego Health and UC Irvine Health between May 2017 and September 2018.
Participants were randomly selected to one of four options with different layouts and formats for indicating sharing preferences: opt-in simple, opt-in detailed, opt-out simple and opt-out detailed. Respondents were asked about their willingness to share demographics as well as specific medical results.
More than 67% of patients indicated they would share all items with researchers from the home institution, with smaller percentages for sharing with other institutions. Less than 4% of participants said they were not willing to share any information with anyone. Most were also happy for the vast majority of their data to be shared.
“These results are important because data from a single institution is often insufficient to achieve statistical significance in research findings,” said Lucila Ohno-Machado, professor of medicine, associate dean for informatics and technology in the UC San Diego School of Medicine and chair of the Department of Biomedical Informatics at UC San Diego Health. “When sample sizes are small, it is unclear whether the research findings generalise to a larger population.”