Details and Information
Visit the SCILHS Website
Organization: Harvard University
Principal Investigator: Kenneth Mandl, MD, MPH
The Scalable Collaborative Infrastructure for a Learning Healthcare System (SCILHS) answers the Institute of Medicine’s call for a learning healthcare system (LHS). 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.
SCILHS is helping PCORI fulfill its mission 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 treatment regimen effectiveness, but also help develop personalized medicine by identifying patients who are eligible for experimental protocols and identifying those who experience medication-related toxicities.
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 this, we partnered with 11 geographically and sociodemographically diverse major medical centers representing approximately 12 million patients. 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.
Today, 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. 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.
Initial Network Use-Case
- High Prevalence Cohort Clinical Condition: Osteoarthritis
- Rare Disorder Clinical Condition:Pulmonary arterial hypertension
- Populations Covered by Initial Focus: Underserved, rural, urban, rare disorders, children, geriatric, minority, disabled, other vulnerable populations