‘Power to the People’ Gets Real in Research
In a recent blog at the NY Times, Steve Lohr observes that “Traditionally, patient information has been tapped for research in large pooled databases” but that is changing due to “Institutional practice, individual attitudes and new technology…” leading to new opportunities in research. He quotes Dr. Stephen Friend of Sage Bionetworks: “The patient, doctor and researcher – each is a different kind of expert.”
Mr. Lohr and Dr. Friend are right on target. We are seeing exactly these trends play out in real-time in www.iConquerMS.org – an initiative funded by the Patient-Centered Outcomes Research Institute – designed not only to collect patient data for research but to be patient-governed, and to advance research into issues of importance to patients.
FKH partnered with the Accelerated Cure Project and Arizona State University to create iConquerMS™.
iConquerMS™ is a pioneering research model. It is overseen by a Governing Board that is largely comprised of people living with MS who are deeply involved in both strategies and network activities. In the iConquerMS™ Research Committee, patients have robust discussions of research protocols, and their insights will be incorporated into research design. At www.iConquerMS.org, patients are invited to submit their data, and to contribute their proposed research queries for consideration. Every aspect of this initiative has input and guidance from those living with the disease, a core principle that will continue as iConquerMS™ collaborates increasingly within the PCORI national research network, comprised of Clinical Centers (known as Clinical Data Research Networks) and Patient-Powered Research Networks (PPRNs).
Today, people who register at www.iConquerMS.org can answer validated research surveys. They can also request Electronic Health Records from their providers and contribute those. In future, we envision the capacity for each individual to contribute genomic data and data collected from their iPhones or linked monitoring devices. Ever-more-direct ways of bridging patients to the research community are likely to emerge in our hyper-connected lives.
There will also be opportunities to go beyond traditional limits of time, space and culture. We intend, for example, to expand iConquerMS™ beyond the United States, to European and Asian countries, to gain insights from diverse demographic, clinical and genomic profiles. We envision a global network of researchers whose teams, studies and data are inter-connected and where ideas can move rapidly and seamlessly to advance knowledge.
We are just at the beginning of democratizing medical discovery. It will be a fascinating and productive experiment, for sure, in which FKH is proud to partner with innovators.