A worthy goal for the nation's still-nascent electronic health-information revolution would be the active involvement of as much 10 percent of the U.S. population as clinical research participants through digital data networks,
, MD, PhD, said at a July 2 workshop on the Stanford campus.
"We need to partner with the American public and to engage a large proportion of our population in medical research," Collins told participants.The
workshop, held July 2-3 in Arrillaga Alumni Center, was sponsored by the
Patient-Centered Outcomes Research Institute, a nonprofit research organization, and attended by about 100 invited participants from across the country, representing almost every domain involved in health research: clinicians, researchers, bioinformatics experts, social-media mavens, patients, patient advocates, pharmaceutical-industry representatives, software developers, ethicists, government regulators, insurance payers and legal scholars. PCORI, with an annual budget of about $500 million, was created by Congress in 2010 under the Patient Protection and Affordable Care Act to both conduct and disseminate medical research that directly informs patients' and providers' health-care decisions.
Courtesy of the Patient Centered Outcomes Research Institute/Photo by Norbert von der GroebenThe event was designed to provide guidance to PCORI on how to efficiently target its research investments and form partnerships to make the best use of the many burgeoning islands of electronic health data —in the form of a diverse multitude of research networks and thousands of providers using electronic medical records — to produce a coherent system that could generate valid information critical for health-care decisions, said the workshop's organizer,
Steven Goodman, MD, PhD, a Stanford professor of medicine and of health research and policy and a member of PCORI's methodology committee.
Creating the underlying electronic infrastructure to achieve this is an enormous challenge, Goodman said. "We have no good way to capture health outcomes on patients over time, and different medical record systems code diseases, treatments, outcomes and patient characteristics differently."
"The successful establishment of such a network could be PCORI's most significant contribution and enduring legacy," said Collins, who sits on PCORI's board of governors.
PCORI executive director Joe Selby, MD, PhD, noted that a well-designed information system will be competent not only to learn what works best, but also to feed back to the health system, rapidly disseminating these findings in as targeted a fashion as possible to patients and providers. "It's got to be a two-way street," Selby said.
During the course of the two-day session, the discussion moved from aggregating electronic health-record data for research to how to harness the power of activated patient networks through social media, and how to use smart phones both to record patient experience in real time and as activity sensors. Aggregating large numbers of patients in these networks holds immense potential for analyzing rare diseases, gauging therapies' effectiveness in different patient subgroups and tracking the progress of patients under different treatment regimes. But of equal importance, participants said, is putting patients at the center by facilitating affordable, efficient care; quickly pushing health information to those who need it; and obtaining patients' informed consent to use their health information for studies that haven't even been conceived of yet. Earning patients' trust is essential and will require their involvement in the leadership of these initiatives and the formulation of research questions, workshop participants said.
This research need not be limited to the effects of drugs and devices. "How health-care delivery is organized may determine its success more than what drug you get," said Goodman. "Is an appointment reminder system in place? Are there nurse-practitioners available for advice whenever it's needed?"
Another challenge participants addressed was the reigning publish-or-perish paradigm that discourages researchers from parting with their data, at least until the findings are published in a peer-reviewed journal. That slows down the timely dissemination of up-to-date health information.
The man who oversees the world's largest health-research budget had a suggestion. "One way you change the culture is to change funding incentives," Collins said. "You can't herd cats, but you can move their food."
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