WASHINGTON--Engaging patients is a key opportunity for clinical research--especially for programs like the Precision Medicine Initiative--but it's also one of the biggest challenges, Kathy Hudson, Ph.D., deputy director for science, outreach and policy at the National Institutes of Health, said during the Office of the National Coordinator's annual meeting.
Hudson noted that in the United Kingdom, the country's biobank has data on half a million patients and asks a lot of participants in terms of the time required and their permission to transfer their health record--without providing any incentive.
"A deep spirit of altruism certainly exists, and I think exists [in the U.S.] as well, but what our key challenge is is making sure the people have the opportunity to participate in research," she said during a panel discussion at the event in the District of Columbia.
"Too often people are not aware that there's a clinical trial that may be relevant to them or there's a study that they can volunteer to participate in. So the way of making the opportunity to participate in research more widely known is one of the challenges."
As part of PMI, she added, NIH will fund five to seven healthcare provider organizations to be partners in the effort. These organizations will invite their patients to participate. Those awards will be made next month, Hudson said.
There also will be an award to facilitate the ability for any person, anywhere to say they want to participate.
"And that, of course, is going to be super challenging," she said. "It's going to be difficult to get access to people who may be elderly, they may be in rural areas, they may be members of underrepresented groups who haven't historically participated in research.
"So we're going to have to think of interesting and innovative ways of enabling any person in America to be able to volunteer for this program."
Rachael Fleurence, Ph.D., director of the Research Infrastructure program at the Patient-Centered Outcomes Research Institute, also spoke about patient participation challenges during the discussion, saying that while her organization has made progress in the area, it has not solved every problem.
While PCORI has reached out to patients to determine what it would take for them to generate and share data as well as to participate more actively in research, Fleurence said she doesn't think they've fully "cracked that nut yet."
"The incentives for patients to participate in research are not yet entirely clear ... the way we engage with people in this is still an open-ended question," she said. "That's still a work in progress on how we as a country change the conversation around participation in research and what that means."