ONC panelists say drive up research participation by increasing value

“We need balance between standardized data and that data that is messier and harder to deal with but has equal value,” said Sally Okun, RN, vice president of advocacy, policy and patient safety at PatientsLikeMe, speaking at the Office of the National Coordinator for Health IT’s fifth annual Consumer Health IT Summit. If providers don’t find a way to establish that balance, “we will miss the opportunity to learn what participants can tell us about their real lives.”

Pat Mastors, executive director and co-founder, Patient Voice Institute, agreed and said health IT needs fields for narrative because so much data happens outside the exam room. “The things we ask for may not be the thing that’s the most important to the patient.”

Efforts to obtain that narrative are evolving, said Adam Resnick, PhD, director of the Children’s Brain Tumor Tissue Consortium, Division of Neurosurgery, The Children’s Hospital of Philadelphia. ”We need more information from a variety of sources on how to do it.” With the “exponentially growing pace of data, it’s very challenging for a single clinician to understand, interpret and interact with it.”

Meanwhile, who gets access to all the data is a big burden, said Jason Bobe, MS, founding executive director of PersonalGenomes.org, and executive director of the Personal Genome Project. “People who sign up [for research projects] will have wildly different preferences. And a lot of learning that happens outside of formal interactions between patients and doctors and researchers and participants. If we want biomed to actually become a cultural activity people want to sign up for we have to make room for this.”

Patients also need to understand that research takes time and isn’t perfect so “we need to be transparent right through the process. It could be years before we see anything. That’s part of the mission of being transparent. We need to create tools and interfaces that are very understandable.”

“Innovation is hard. There are a lot of things that won’t be right the first time,” said Bobe. Stakeholders must plan on that as well as establish a plan for getting feedback. He added that research now offers “a very bland and generic benefit for society. That’s probably why participation rates in research are very, very low—not because people don’t care but because we haven’t made research enterprise something which is personally meaningful except for those who are really dealing with chronic disease and are super motivated.”

It’s important to have healthy people involved also, he said. Bobe said there’s a theory that people rarely return their IKEA furniture because they spent the time and their own elbow grease putting it together. “If we want change in the healthcare culture, then we have to have it be do-it-yourself” and have patients participate in building the process.