Tags: research and discovery , industry interactions

Partners HealthCare, Massachusetts General Hospital and Brigham and Women’s Hospital are joining a nationwide research effort to “crowd source” medical information from no less than 1 million individuals as part of an effort to better understand disease and its cures.

This expansive effort, called the Precision Medicine Initiative (PMI) Cohort Program, will collect medical data from patients to help create and “personalized” treatments that are based on their genetic information and even lifestyle choices. As part of the initiative, Partners will team up with Boston Medical Center and Boston University to contribute responses from 10,000 volunteers.

“This is trying to bring information on a large scale of individual differences that make some of us more susceptible to certain disease, or make some of us respond to treatments differently,” Dr. Jordan W. Smoller, a researcher in the psychiatry department at Mass. General and a lead investigator of the project told the Boston Globe. “It’s really unprecedented in its scale and scope.”

This is trying to bring information on a large scale of individual differences that make some of us more susceptible to certain disease, or make some of us respond to treatments differently. It’s really unprecedented in its scale and scope.

Participants will contribute a range of data about themselves by doing things like completing questionnaires, providing blood samples, and sharing real-time information via smartphones or wearable devices. It should be noted that privacy and security safeguards would protect all data collected from patients for the PMI.

A primary goal of the PMI Cohort Program is to create a national resource for researchers, including citizen scientists, to help answer important questions about a variety of health conditions. When the program opens for enrollment, people may sign up through a participating health care provider organization (HPO), or directly using the program website, smartphone application or call center.

The work of Partners, with Boston Medical Center and Boston University, will be complemented by three other regional groups named by NIH today. Combined, the new HPOs will receive initial funds of $5.5 million to begin recruitment and build infrastructure. As efforts advance, the centers may receive first-year funds up to a total of $16 million. The four HPOs join awardees announced earlier this year, to enroll interested individuals, gather participants’ health information and biospecimens and provide input on developing plans for the program.