Most patients say they would share records for medical research

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Most patients are willing to share information from their electronic medical records and biospecimens for research purposes, according to a recently completed study.

However, a study done at University of California San Diego School of Medicine in collaboration with researchers in several other states finds that limitations exist regarding patient willingness on some types of information.

For the research, surveys were done at UC San Diego Health and UC Irvine Health; findings have been published in the August issue of JAMA Network Open.

Participants were randomly selected to one of four different formats for indicating sharing preferences. The simplest formats had 18 categories where participants could chose to share information, and the detailed formats had 59 catagories, covering age, sex, race, socioeconomic status, lab results, genetic tests, drug screening, imaging and biospecimens, among other factors.

Participants also had to decide the degree to which they would share data with researchers only in their health system, or with researchers at other institutions.

Nearly two thirds of participants indicated willingness to share all items with researchers from their healthcare entity, and about a quarter were willing to share all items with all interested researchers regardless of affiliation. That was a finding authors found reassuring because it could help in planning studies based on electronic health records data and biospecimens that would be broadly shared. And only four percent of participants decided to not share their data with anyone.

“These results are important because data from a single institution is often insufficient to achieve statistical significance in research findings,” says Lucila Ohno-Machado, MD, associate dean for informatics and technology in the UC San Diego School of Medicine. “When sample sizes are small, it is unclear whether the research findings generalize to a larger population.”

Another finding, the way in which sharing preferences are elicited, also has an influence. There was greater sharing when respondents were asked to opt out than when they were asked to opt in. Whether the form had details about the items or used broad categories did not have an influence on patient data sharing with researchers.

“This is important because a simple form could be used in the future to elicit choices from all patients, saving their time without significantly affecting their privacy preferences,” Machado explains.

The study also found that a majority of survey participants identified at least one item of their data that they did not want to share with a particular type of researcher, such as someone from another institution.

“This finding is important 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,” Machado cautions.

The full study is available here.

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