Patients care what their electronic health data are used for, survey shows

Patients do care about what becomes of their health information after it's used for their treatment, and they care more about what it's used for than who's using it.

That's according to a survey report published online in the Journal of the American Medical Association summarizing research aimed to measure patient preferences about sharing their electronic health information for so-called “secondary uses.”

“Participants cared most about the specific purpose for using their health information, although differences were smaller among racial and ethnic minorities,” said the report, “Public Preferences About Secondary Uses of Electronic Health Information.” Dr. David Grande, with the division of general internal medicine in the Department of Medicine at University of Pennsylvania Perelman School of Medicine, was its lead author. The study was funded by a grant from the National Human Genome Research Institute, part of the National Institutes of Health.

“The use of data was the factor that most influenced participants' willingness to share their electronic health information,” the researchers said. “The user of the data was less important.” Policies, they said, should reflect those preferences.

Grande and his team surveyed 3,064 adults, asking them to rank on a scale of 1 to 10 their willingness (1 being least willing, 10 most willing) to share their electronic personal health information for research, quality improvement or commercial marketing. They asked patients to rank their preferences across three categories of users—university hospitals, public health departments and commercial drug companies. The patients' decision matrix also added a variable of data sensitivity by including the variable that their data included genetic information about their own cancer risk.

For the researchers, a “baseline scenario” was a university hospital that was sharing low-sensitivity data for research work. In that use case, the willingness of individuals to share their information was deemed to be a “moderately high” 6.82 rating overall, with slightly higher ratings for whites, 6.98, than African Americans, 6.58, and Hispanics, 6.38.

Generally speaking, the comfort level dropped for public health organizations' use of the data and fell even further for marketers. University hospitals were viewed more favorably and out-ranked public health departments, which typically faired better than drug makers.

And for all of those users, the comfort level dropped in scenarios that involved marketing.

For example, when the hypothetical case was university hospitals making secondary use of low sensitivity data for marketing, the numbers dropped to 4.87 for respondents overall, 4.62 for whites, 5.29 for African Americans, 5.55 for Hispanics.

Follow Joseph Conn on Twitter: @MHJConn