More than two-thirds of patients would willingly share their entire medical record with their primary healthcare organization for research purposes, and many would share at least some of their data with external researchers, a new study shows.
The study, published Aug. 21 in JAMA Network Open, surveyed more than 1,200 patients at University of California San Diego Health and UC Irvine Health about their willingness to share 59 pieces of medical data, ranging from demographic information to lab results, imaging and biospecimens.
Just over 67 percent of respondents said they would share their entire record with researchers from their healthcare organization, and about one quarter were willing to share all their data with researchers from other for- and nonprofit institutions. More than 70 percent said they would share at least some information with nonprofit institutions, and about 50 percent said the same regarding for-profit groups.
Especially promising to the study's authors was the finding that fewer than 4 percent of those surveyed said they would refuse to share any information for research purposes.
"These results are important because data from a single institution is often insufficient to achieve statistical significance in research findings," said Lucila Ohno-Machado, MD, PhD, the study's senior author 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 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."
More articles on health IT:
AdventHealth launches largest AI-enabled Mission Control command center in US
Challenges blockchain must overcome to be successful
HHS security program 'not effective,' OMB audit finds