Clinical trial volunteers increasingly being allowed to see their own data

Medical researchers are becoming more open to letting participants in clinical trials see their test results, but drug companies doubt most volunteers will find the information useful.

As reported by STAT News, companies are following new federal guidelines saying sharing data with clinical trial participants should be the rule, rather than the exception. Pfizer tried out an online system showing EKGs and vital sign measurements from two diabetes drug trials in 2013, but only 15 percent of study participants accessed it.

“What we found is patients expressing that they wanted access, but not a high volume of clicks for access,” said Craig Lipset, head of clinical innovation at Pfizer. “I’m not sure they felt there were enough things to do with the data that were truly meaningful.”

For patient advocates, even if the data may not all that easy for a typical person to use, providing it is just the right thing to do.

“You’re asking me to spend time, to literally devote my body and possibly compromise my health to help advance a therapy, and yet I tend to be the invisible partner,” said Laura Kolaczkowski, a patient advocate in Ohio and co-principal investigator for iConquerMS, which lets people with multiple sclerosis share their data for research.

For more on how these data-sharing efforts are advancing in the world of EHRs and mobile apps, click on the link below: