Patient Preferences for Research Recruitment

Patients want to be asked permission to participate in research even if it only involves reviews of anonymized medical records, according to a study published in the Annals of Internal Medicine.

The researchers surveyed more than 1000 US adults to assess their attitudes about risks and preferences for notification and consent for research on medical practices. While nearly all (97%) agree that health systems should evaluate standard treatments, most wanted to be asked permission to participate when presented with 3 different scenarios (ranging from 75.2% to 80.4%).

“We didn’t anticipate that patients would want to grant permission for medical record searches, a research method that involves much less risk than most randomized studies that compare standard treatment options,” Mildred Cho, PhD, professor of pediatrics and of medicine at the Stanford University School of Medicine, said in a statement. “The good news was that most patients said they would forgo documented consent or accept simple approaches to granting permission, even verbal permissions, if requiring written agreements would hinder this type of comparative effectiveness research.”

The attitudes of patients to accept less elaborate approaches to gain consent are not aligned with proposed regulatory guidance, according to the authors.

The survey included questions about patient preferences for being notified about studies, and their perceptions of risk and willingness to participant in 3 different scenarios, which were presented in video.

“One of our first challenges was to dispel the ‘doctors know best’ myth. Doctors don’t always know which treatments are best for individual patients,” David Magnus, PhD, study co-author and director of the Stanford Center for Biomedical Ethics, said. “In the absence of good evidence, these choices are often influenced by advertising, insurance coverage and local preferences. Busting this myth was essential in explaining why comparative-effectiveness research is so important.”

The researchers also found that patients preferred their doctors, not medical researchers, to ask for their consent to participate in research.