Researchers at University of California San Diego School of Medicine, with collaborators in California, North Carolina and Texas, recently asked patients at two academic hospitals to respond to a variety of different approaches seeking to share their medical data with other researchers.
The findings were published in the August 21, 2019, online issue of JAMA Network Open.
The survey was conducted at two academic hospitals — UC San Diego Health and UC Irvine Health between May 1, 2017, and September 31, 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. In the simple forms, there were 18 categories where participants could choose to share information; in the detailed forms, there were 59 items. The items ranged from demographics like age, sex and race and socioeconomic status to lab results (genetic tests, drug screening, etc.), imaging (x-rays, MRI) and biospecimens (blood, urine, tissue).
Participants were also asked to what degree they would be willing to share their medical data: with researchers only in the same health care organization or with those working at other nonprofit or for-profit institutions.
Among 1,800 eligible participants, 1,246 completed the data sharing survey and were included in the analysis and 850 responded to a satisfaction survey. Slightly less than 60% were female and slightly less than 80% were white. The mean age was 51 years old.
More than 67% of survey participants indicated they would share all items with researchers from the home institution (which patients presumably already trust with their health care), with progressively smaller percentages for sharing with other nonprofit institutions or with other for-profit institutions. Many of the respondents indicated that they were only unwilling to share a few items.
“These results are important because data from a single institution is often insufficient to achieve statistical significance in research findings,” said the study’s senior author, Lucila Ohno-Machado, MD, PhD, 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 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.”
Generally speaking, the current state of affairs concerning the sharing of “anonymized” patient health data for secondary research is uneven and unsettled. It has been shown that anonymization methods — in which data sets are either encrypted or stripped of personally identifiable information — are not 100% effective. Since 2013, newly enrolled patients are required to proactively consent to sharing their personal health information for research studies or future secondary use.
In California, a patient’s specific permission is required to share mental health, substance abuse, HIV status and genetic information, but other items or conditions are not specified. In many states, there is no requirement for a patient’s specific permission on these types of items before they can be shared. Today, for practical purposes, patients have the option to decline any part of their medical record be used for research. They cannot indicate what types of research or researcher should be able to obtain their records.
Almost three-quarters of respondents — 67.1%— said they would be willing to share all items with researchers from their health care institutions; almost one-quarter said they would be willing to share all items with all interested researchers, a finding the authors said was reassuring and could help in the planning of studies based on EHRs and biospecimens that would be expected to be broadly shared.
Equally encouraging: Less than 4% of participants said they were not willing to share any information with anyone.
For the full study, visit jamanetwork.com/journals/jamanetworkopen/fullarticle/2748592.
