As with care delivery, the process of innovation itself should be pushed out toward patients.
Many conference participants suggested the decentralization of care delivery will and must occur in tandem with a decentralization of the innovative process more broadly. Like centralized providers, the traditional avenues of innovation may be too narrow, unnecessarily restricting the universe of possibilities. By opening doors for untapped talent, we might discover innovations that would otherwise be overlooked by the usual professionals.
Alpheus Bingham, Co-founder of InnoCentive—an online platform for connecting those with innovation problems with potential solvers—said that finding real innovation means tapping the expertise of “non-experts.” He cited the conference itself as an example: “There were 509 invitees, and I’m going to just guess that the total problem-solving power of the ones who weren’t invited to this conference is greater than the total solving power of those who were.” Bingham cited a collaboration among InnoCentive, Harvard University, and the Helmsley Foundation, which investigated potential hypotheses in diabetes treatment that “were not being adequately resourced.” When they looked beyond major university science initiatives to reach patients, doctors, and other caregivers, they found fruitful areas of diabetes research focused on prevention, care, and support of the patient.
Bingham suggested that “our identities as experts” have become an obstacle to broader innovation. “Maybe the reason that people with your skills and backgrounds solve the interesting problems of the world is only because you’re first in line. It wasn’t because the questions got asked of everybody at once.”
As with care delivery, the decentralization of the innovation process is increasingly relying on patients themselves. When organized into collaborative groups, patients can be agents for accelerating the search for cures. Kathryn Giusti, Founder and CEO, Multiple Myeloma Research Foundation (MMRF), articulated a model rooted in her own personal experience. At age 37, she was diagnosed with multiple myeloma, “a 100 percent fatal blood cancer,” with a life expectancy of three years from diagnosis. Recognizing that hers was a “hugely neglected cancer,” she founded the MMRF. By combining fundraising with an open tissue bank and a unique depository of sequential patient data, the foundation was able to attract more scientists and stimulate new research.
“In the years since I was diagnosed, we have more than doubled the lifespan of our patients from three years to eight,” Giusti said. The crucial element, she suggested, was creating a patient community that developed “our own data systems and got everybody working together… the whole point of this is to make sure that we start to identify new targets and new biomarkers, with all the data being in the public domain for thousands of people to look at, instead of just having one or two or three academic centers. It’s much more about crowdsourcing and information gathering.”