Patients Willing To Share Info, In Some Cases

By Katie Wike, contributing writer

A University of Pennsylvania Perelman School of Medicine study finds patients are willing to share their health data but prefer it’s used for research, rather than marketing.

Researchers at the University of Pennsylvania Perelman School of Medicine say patients readily share their information when it’s for what they consider a good cause. The study found, for example, patients were much more willing to share their data for research purposes rather than for marketing.

“What we found is that consumers care a lot about how their health information is used,” said Dr. David Grande, the study’s lead researcher. “What’s surprising is they care more about what it’s being used for than whether consent was obtained.”

Fierce Health IT reports the 3,000 respondents to the study felt that whether or not they gave consent for the use of their information was in fact less important than to them than what that information was going to be used for. Participants did not want their data to be used for marketing purposes.

They were given hypothetical situations and asked their feelings on the use of their information. For example, Reuters reports participants were asked if it’s appropriate to use the records of thousands of patients to identify those with diabetes and see which medications they’re taking in an effort to improve care. Another scenario asked respondents if it’s appropriate for drug companies to use that information to learn what types of people use their products.

Respondents were then able to rate each scenario from 1 to 10 based on appropriateness. “The lowest rating from participants - an average of 3.81 - was for using health data for marketing when consent was not obtained. The highest rating - an average of 7.06 - was for using health information for research when consent was obtained” writes Reuters.

“I think many of these policy discussions about privacy have come from smart people sitting in a room and what they think ethically and how people ought to be protected, but we don’t often go out and ask individuals how they want it to be used,” Grande said.