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Scalable Collaborative Infrastructure for a Learning Healthcare System (SCILHS): phase II
Investigator (PI): Mandl, Kenneth D
Performing Organization (PO): (Current): Harvard University, Harvard Medical School, Department of Biomedical Informatics / (617) 432-2144
Supporting Agency (SA): Patient-Centered Outcomes Research Institute (PCORI)
Initial Year: 2015
Final Year: 2018
Record Source/Award ID: PCORI/CDRN-1306-04608 Phase II
Funding: Total Award Amount: $9,034,487
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Abstract: The Scalable Collaborative Infrastructure for a Learning Healthcare System (SCILHS) answers the Institute of Medicine’s call for a learning healthcare system (LHS). An LHS learns from every patient and applies that knowledge to inform the collaborative healthcare choices of each patient and provider. And critically, an LHS drives the process of discovery as a natural outgrowth of patient care. An LHS uses computerized technology to collect data from each healthcare encounter, and to support decisions at the point of care and for patients at home. It gets smarter every day. US health care is not yet built as a learning healthcare system, but SCILHS is taking key steps. SCILHS engages patients and clinicians as collaborators with researchers, to prioritize research, design studies, and interpret results. We have built on an existing network of hospitals and health systems that have standardized a common computerized data platform. With this platform, we will help America realize the potential of the federal $48 billion investment in electronic health records to make the healthcare system safer and more efficient. SCILHS is helping PCORI fulfill its mission authorized by the Affordable Care Act: to be able to rapidly assess which treatments work and which do not—and to do it efficiently and at low cost by collecting data inside healthcare systems. SCILHS will not only facilitate the comparative effectiveness of different treatment regimens, but also help develop personalized medicine by identifying patients who are eligible for experimental protocols and identifying those who experience medication-related toxicities. SCILHS leverages our 17-year effort and investment to build open source and free software that has been adopted at over 120 medical centers worldwide. The challenge of Phase I was to create a diverse and collaborative patient-centered network and to ensure SCILHS technologies were completely harmonized with the PCORNet data structures and software. To achieve the Phase I CDRN goals, we partnered with 10 geographically and sociodemographically diverse major medical centers to form a network that contained populations representing the full diversity of America. With patients, clinicians, and leadership at each of these institutions, we developed a robust governance framework that truly engages patients and their clinicians as partners, co-investigators, and advisors. SCILHS has exceeded our Phase I goals. Today, SCILHS is a full partner in PCORNet, and our whole is greater than the sum of our parts. We rapidly built the cross-institutional teams necessary to partner with our patients to address three important health questions, including pulmonary arterial hypertension (rare disease), osteoarthritis (common disease), and obesity. By collaborating with patients, we refined the research questions and approaches to implement them. We are now launching studies in suicide prevention, autism, essential hypertension, and prevention of cardiovascular disease. Most recently, we have joined forces with a major National Institutes of Health (National Center for Advancing Translational Research) network that uses the same computerized infrastructure at 21 academic medical centers nationwide. By partnering with patient-powered networks we have already begun to pioneer new approaches that complement traditional clinical trials or research dependent on traditional healthcare systems.
MeSH Terms:
  • Academic Medical Center
  • Cohort Studies
  • Delivery of Health Care
  • * Electronic Health Records
  • Health Promotion
  • Humans
  • Hypertension, Pulmonary /therapy
  • Medical Informatics /*methods
  • National Institutes of Health (U.S.)
  • Obesity /therapy
  • Osteoarthritis /therapy
  • Outcome Assessment, Health Care
  • Patient Protection and Affordable Care Act
  • Patient-Centered Care
  • Precision Medicine
  • Pulmonary Artery /pathology
  • Randomized Controlled Trials as Topic
  • Translational Medical Research /organization & administration
  • United States
Country: United States
State: Massachusetts
Zip Code: 02115
UI: 20162056
Project Status: Completed
Related Records: Scalable Collaborative Infrastructure for a Learning Healthcare System (SCILHS)