As medicine becomes both bigger and more personalized, the need for massive databases of patient records, such as the 1 million person All of Us Research Program, become increasingly essential to fueling both new discoveries and translational treatments.
But the looming, lingering question is to what degree are individual patients willing to share medical records and biospecimens with researchers and institutions beyond their personal physician or health care system? And more specifically, how should patients be asked and what information are they most likely to share?
In a novel attempt to answer these questions, researchers at University of California San Diego School of Medicine, with collaborators in California, North Carolina and Texas, asked patients at two academic hospitals to respond to a variety of different approaches seeking to share their medical data with other researchers.
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The findings are 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 percent were female and slightly less than 80 percent were white. The mean age was 51 years old.
More than 67 percent 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.