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The Power of Shared Data

Building the foundations of a health system that learns from itself

By JAKE MILLER
January 22, 2014

Image: iStock

A new $7 million award to the Harvard Medical School Center for Biomedical Informatics from the Patient-Centered Outcomes Research Institute (PCORI) will create a far-reaching data platform that will link patients and doctors across 10 health systems around the U.S., fostering critical medical research.

Called the Scalable Collaborative Insfrastructure for a Learning Health System (SCILHS—pronounced “skills”), the network will leverage $48 billion of federal investment in health information technology to enable a common data platform that will cover more than 8 million patients, enabling them to plug universally into a single point of care. This will enable clinicians and patients to participate in research during the patient encounter, researchers said.

Central to the success of SCILHS is the development of innovative apps to improve patient-centered outcomes research.

“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.”

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 build on a platform of federally-funded, open source informatics tools—including informatics for integrating biology and the bedside (i2B2), the Shared Research Information Network (SHRINE) and the SMART Platforms “app store for health” project. 

SCILHS will allow for sharing, querying and using vast collections of biomedical data, including electronic medical records and genomic information. Myriad health systems around the country have already adopted these open-source tools, which were developed at HMS and its affiliated hospitals.

SCILHS is one of 29 projects approved for a total of $93.5 million from PCORI on Dec. 17, 2013 to form PCORnet: the National Patient-Centered National Clinical Research Network. Several other awardees are also building their infrastructures on the i2B2 and SHRINE platforms.

"We have begun to lay the technological foundation for this work, and researchers are using the data to great effect already, but we don't yet have the tools in place to collect outcomes from patients and practitioners directly at the point of care," said Murphy.  “Through this extraordinary collaborative project, by the end of 18 months all 10 of the health systems in our network will have these new tools up and running.”

“The information that is created during the day-to-day operation of the health system has already proven to be a valuable resource to researchers who are trying to understand disease and therapeutics,” said Schneeweiss. “We’re very excited about building tools that will allow patients and health practitioners to put the power of that data to work.”

The team will also work to standardize data so that it can be more easily shared beyond the SCILHS network. It will also help develop policies governing data sharing, security and protection of patient privacy. The project will work closely with IT teams, researchers, clinical leaders and patients in all of the participating hospitals and health systems.

“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,” said Manny Hernandez, patient advocate and president of the Diabetes Hands Foundation and a key member of the project leadership team. “Patients will have a full partnership role in envisioning and implementing SCILHS, to help make sure that it works for us.”

The project will also refine the network’s capacity to engage and recruit patients and other stakeholders interested in participating in research.

Instead of hoping that people with the right demographics, behavior and clinical symptoms happen to see a poster on a subway platform calling for potential clinical trial participants that match their profile, this new system could identify candidates based on their medical records and email them to see if they are interested in participating.

The system could also potentially automate future communications about the results of the clinical trial and evaluations of the outcomes of other available therapeutic options, giving patients and providers real-time evidence about what treatments work best.

Harvard Catalyst | The Harvard Clinical and Translational Science Center played a key role in bringing together a diverse team of investigators within Harvard and its affiliated institutions and in building strong working relationships with other medical centers throughout the country. The partner institutions in SCILHS are:

  • Beth Israel Deaconess Medical Center
  • Boston Children’s Hospital
  • Boston Health Net (Boston Medical Center and Community Health Centers)
  • Cincinnati Children’s Hospital
  • Columbia University Medical Center and New York Presbyterian Hospital
  • Harvard Medical School
  • Morehouse School of Medicine/Grady Memorial Hospital (Part of Research Centers for Minority Institutions (RCMI) Program)
  • Partners HealthCare System (includes MGH and BWH)
  • University of Texas Health Science Center at Houston
  • University of Mississippi Medical Center (Part of Research Centers for Minority Institutions (RCMI) Program)
  • Wake Forest Baptist Medical Center

“We are pleased that Harvard-affiliated health care centers will be part of this exciting initiative to build the data structures needed to significantly enhance the speed and efficiency of patient-centered comparative effectiveness research,” said PCORI Executive Director Joe Selby. “The process to select the awardees was very competitive and the Scalable Collaborative Infrastructure for a Learning Health System (SCILHS) demonstrated it has the expertise, resources and commitment to engaging patients and other stakeholders to be an excellent fit in PCORnet.”

In September 2013, Harvard Pilgrim Health Care Institute was awarded a grant to create a coordinating center that will provide technical and logistical support for the development and integration of PCORNet.

The coordinating center, a consortium of research centers and university programs, will be lead by Richard Platt, head of the Harvard Medical School Department of Population Medicine at the Harvard Pilgrim Health Care Institute.

PCORI envisions PCORnet to be a secure, national data network that improves the speed, efficiency and use of patient-centered comparative effectiveness research (CER). By integrating data available in the 29 individual networks, PCORnet aims to provide access to a large amount of diverse, nationally representative health information that can support a range of study designs. Researchers said it will reduce the time and effort needed to launch new studies and focus research on questions and outcomes that are especially useful to patients and those who care for them.

Moreover, PCORnet will join together networks operated by both patient communities and health systems and will require patients' and other stakeholders' involvement in all aspects of the collection and use of the data.  By enabling researchers and patients, clinicians and other end-users of study results to interact directly, jointly determining research priorities, such as the selection of specific studies to support, PCORnet aims to advance the shift in clinical research from investigator-driven to patient-centered studies.

SCILHS was selected through a review process in which patients, caregivers and other stakeholders joined scientists to evaluate the proposals. Applicants were assessed on the capacity of their networks to collect complete, comprehensive clinical data, and on how well they will engage patients and other stakeholders, as well as their ability to maintain data security and patient privacy, among other criteria.

All awards are approved pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract.

PCORI has awarded a total of $464.4 million since it began funding CER in 2012. For more information about PCORI funding, visit http://pcori.org/funding-opportunities.

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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