Reform Update: PCORI seeks the wisdom of crowds

The Patient-Centered Outcomes Research Institute is trying to live up to the first two words in its name.

A team of researchers from the University of Michigan at Ann Arbor has been tapped by PCORI to scale up their prototype of a Web-based crowd-sourcing platform called WellSpringboard, which is designed to enable patients to propose ideas and pledge funds for clinical research.

Washington-based PCORI, an independent not-for-profit group established by the healthcare reform law, recently awarded the Michigan researchers $40,000, the top prize from its PCORI Challenge, a competition seeking novel approaches to connecting researchers with interested patients.

“Patients, caregivers, clinicians and other stakeholders must be actively involved in the development and conduct of health research to fill the knowledge gaps that hinder health decisionmaking,” said Dr. Anne Beal, PCORI's deputy executive director and chief officer for engagement, in a news release.

Dr. Matthew Davis, a primary-care physician and health services researcher at the University of Michigan, and the lead investigator of the team that developed the platform, said the approach shifts much of the focus onto patients—a change he says he hopes will boost dismally low rates of public participation in research.

“The idea is that the public can be more engaged with an idea that it knows is coming from someone else just like them instead of a researcher whose motives they may not fully understand,” Davis said in an interview.

The platform works like this: A person has an idea for a research project and records a video explaining what that idea is. WellSpringboard posts the video on its site, sets a goal for funding and then spreads the word about the project using social media outlets like Facebook and Twitter. Once the funding target is reached, the project is opened up to researchers, who post their profiles to the site and whose applications are reviewed by a board of scientists and members of the public.

Davis gave the example of a boy with poorly controlled asthma who noticed that his classmates' asthma was better controlled after taking certain medications prescribed for other conditions. Perceiving a potential off-label benefit, the boy records a video explaining why he thinks researchers should look into his question. WellSpringboard, which will function as a not-for-profit, posts the video and sets the funding target at, say, $50,000.

Donors' pledges are only collected when the final funding target is met, Davis added.

“We want to make sure the ideas are from the public, supported by the public and reviewed by the public,” he said. “By making this as transparent as possible, our hope is that people get excited and participate in research in ways they never have before.”

The $40,000 award from PCORI will be used to ready the platform for a full-scale launch, ideally sometime in the next 12 months, Davis said.

“I don't think this will replace scientist-generated research, but I think we can enrich research and engage the public in a new way,” he said.

PCORI awarded $88.6 million in comparative-effectiveness research grants in May, and the group says it aims to grant at least $355 million in funds in 2013.

The Agency for Healthcare Research and Quality recently highlighted Delaware's experience with setting up a health information exchange designed to support the state's patient-centered medical homes and accountable care organizations. During a June 5 Web event, AHRQ shared lessons from the Delaware Health Information Network, the nation's first operational statewide HIE.

In an editorial in the Annals of Family Medicine, researchers from the Agency for Healthcare Research and Quality outlined five themes they say are common among primary-care practices that have successfully transitioned to patient-centered medical homes. Those themes include strong leadership, a focus on team-based care and structural supports, such as an electronic health record.

Follow Maureen McKinney on Twitter: @MHMMcKinney