The Dawn of Shared Data

shareddataSMALL

January 2014, wonderful news found its way to our inboxes about a project getting Patient-Centered Outcomes Research Institute (PCORI) funding.

We are happy to share news that the team at Harvard Medical School Center for Biomedical Informatics (the same group that DHF collaborated with to bring TuAnalyze to life), was awarded a $7 Million contract from PCORI to work on a project called, Scalable Collaborative Insfrastructure for a Learning Health System (SCILHS—pronounced “skills”). SCILHS is a data platform that will link patients and doctors across 10 health systems around the U.S. SCILHS is one of 29 projects approved for a total of $93.5 million from PCORI to form a new national resource that aims to boost the efficiency of health research.

The SCILHS research team includes members from Boston Children’s Hospital, Boston Medical Center, Brigham and Women’s Hospital, Massachusetts General Hospital and other institutions around the country. It will be led by principal investigator Mandl and co-principal investigator Shawn Murphy, HMS associate professor of neurology at Mass General and director of Research Information Services and Computing at Partners HealthCare, as well as co-principal investigator Sebastian Schneeweiss, HMS professor of medicine at Brigham and Women’s and professor in the Department of Epidemiology at Harvard School of Public Health.

“SCILHS will move innovative informatics from the research lab to the point of care,” said Kenneth Mandl, professor of pediatrics at Harvard Medical School and the Center for Biomedical Informatics and chair in Biomedical Informatics and Population Health at Boston Children’s. “We’re building the IT backbone for what the Institute of Medicine calls a ‘learning healthcare system.’ SCILHS will engage patients and clinicians as partners in research to learn together from every encounter.”

This great team is now working on creating a sustainable and intuitive data collection platform that integrates and coalesces health data and outcomes across many health systems!

The idea of creating open source data platforms for people with diabetes is not a terribly new concept. Organizations like Tidepool have come into existence to approach this very issue.  After all, it’s hard to argue against the notion that data collection leads to insights and the possibility of improved health outcomes not only for people with diabetes, but for anyone affected by any medical condition.

Data leads to answers and this multi-site team, including Harvard Medical School Center for Biomedical Informatics, is working with patients to make that data collection a more patient-centric approach.

Manny Hernandez, patient advocate and president of the Diabetes Hands Foundation, is an integral part of the project leadership team developing the idea for SCILHS. As Chair of the Patient and Family Advisory Panel he commented:

“One especially exciting aspect of this project is that patients aren’t just being treated as research subjects or potential beneficiaries of these new tools that are being developed for them. Patients will have a full partnership role in envisioning and implementing SCILHS, to help make sure that it works for us.”

Could this be the dawning of the kind of shared data people with diabetes would so greatly benefit from?

Could this be the beginning of understanding a new dimension of healthcare and healing?

It is certainly possible and we think it is a strong step in the right direction!

Congratulations to the SCILHS team for pioneering a new way to collect and share data in the health field!

About PCORI
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

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