SCILHS - Scalable Collaborative Infrastructure for a Learning Health System

Kate McGroarty-King

Matt Might joins SCILHS Team as Patient Co-Investigator

by Kate McGroarty-King

SCILHS Leadership is pleased to announce the newest member of the SCILHS team. Matt Might, PhD joins SCILHS as Patient Co-Investigator. Dr. Might is an Associate Professor of Computing at the University of Utah. He is the father of the first N-Glycanase (NGLY1) deficient patient ever discovered and is now President of NGLY1.org, a foundation dedicated to understanding, treating and curing the disorder. To find more patients, Dr. Might engineered a blog post to search for them over the internet, and in less than three years, 35 NGLY1 patients have been discovered. Dr. Might is now an advisor to the NIH-sponsored Undiagnosed Diseases Network (UDN) with an emphasis on patient engagement and Internet-driven case finding. You can read more about his efforts towards researching NGLY1 diseases in this New Yorker Profile.

“I’m excited to join SCILHS because it brings together a truly unique network of resources” says Dr. Might.  “From ‘precision awareness’ to rare disease patient matchmaking, SCILHS offers transformative research opportunities with broad public and individual health benefits.”

In his work at the University of Utah, Dr. Might conducts research on cybersecurity, scientific computing, and medical Robotics on behalf of DARPA, the National Science Foundation and the National Nuclear Security Administration. In 2014, he was appointed one of six Presidential Scholars at the University of Utah and received a CAREER Award from the National Science Foundation. He is currently a visiting associate professor in at the Harvard Medical School department of Biomedical Informatics  He received his PhD in Computer Science from Georgia Tech in 2007. He regularly blogs at blog.might.net and tweets from @mattmight.

SCILHS PI Mandl describes Dr. Might as “a pioneer in patient-driven medicine, and one who will help us make SCILHS work for patients on diagnostic journeys.”

SCILHS Approved for $8.6 million to support Second Phase of Development

by Kate McGroarty-King

SCILHS, The Scalable Collaborative Infrastructure for a Learning Healthcare system, has been approved for a three-year funding award by the Patient-Centered Outcomes Research Institute (PCORI) as part of the second phase of the development of PCORnet, the National Patient-Centered Clinical Research Network.

SCILHS leverages an informatics infrastructure that our investigators have developed over the past 15 years in the Department of Biomedical Informatics at Harvard Medical School, the Computational Health Informatics Program at Boston Children’s Hospital, and Partners Healthcare.  SCILHS includes 14 healthcare centers throughout the U.S., representing the full diversity of to develop the Scalable Collaborative Infrastructure for a Learning Health System (SCILHS, pronounced “skills”). An open-source platform, the system covers more than 12 million patients and drives clinician and patient participation in research.

“SCILHS will move innovative informatics from the research lab to the point of care,” said Ken Mandl, SCILHS PI. “We are flipping clinical trials to a patient-driven and data driven model, embedded in the care delivery system.”

This funding award continues PCORI’s support for SCILHS participation in PCORnet, a large, collaborative research initiative designed to link researchers, patient communities, clinicians, and health systems in productive research partnerships that leverage the power of large volumes of health data maintained by the partner networks.

PCORI provided $7 million to SCILHS during the first phase of PCORnet’s development, which began in the spring of 2014.

“We’re pleased that SCILHS has been approved for this funding support to continue our productive mutual efforts to build what we intend to be a premier national resource for conducting high-quality, patient-centered clinical research,” said PCORI Executive Director Joe Selby, MD, MPH. “I greatly appreciate the contributions of all the PCORnet partners during Phase I, which readied PCORnet for a robust start on an exciting second phase of expansion and the launch of several research studies.”

The funding award to SCILHS has been approved by PCORI’s Board pending completion of a business and programmatic review by PCORI staff and negotiation of a formal award contract. PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund research that will provide patients, their caregivers and clinicians with the evidence-based information they need to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work.

SCILHS Network approved to participate in Two $4.5 Million Obesity Studies

by Kate McGroarty-King

The SCILHS Network has been approved to participate in two new studies on obesity. Each award is $4.5 million and is funded by the Patient-Centered Outcomes Research Institute (PCORI). The first study, Short- and Long-term Effects of Antibiotics on Childhood Growth, will examine the relationship between the antibiotics often given to babies and toddlers and the risk for obesity later in childhood. The second study will compare the health benefits and safety associated with the three main methods of bariatric surgery: Roux-en-Y gastric bypass, adjustable gastric banding, and sleeve gastrectomy. The goal is to give patients and their health care providers the information they need to choose which type of surgery is best for them. Both studies fully engage patient partners who helped develop the study and select outcomes that matter most to them.

Elsie Taveras, MD, MPH (MGH) will serve as the SCILHS lead investigator for the Obesity and Antibiotics study, with participation from Wake Forest, Boston Medical Center, and Massachusetts General Hospital. Ali Tavakkoli, MB BS, FRCS, (BWH) will lead the Bariatric study for the SCILHS sites which will include Brigham and Women’s Hospital, Wake Forest, Massachusetts General Hospital, and Beth Israel Deaconess Medical Center.

This study award continues PCORI’s efforts to develop PCORnet, a large, collaborative research initiative designed to link researchers, patient communities, clinicians, and health systems in productive research partnerships that leverage the power of large volumes of health data maintained by the partner networks. PCORnet will enable the nation to conduct clinical research more quickly and less expensively than is now possible and will ensure that research focuses on the questions and outcomes that matter most to patients and those who care for them. PCORnet has established 11 Clinical Data Research Networks or CDRNs, including SCILHS, which have been developing the PCORnet infrastructure.

To date, PCORI has approved or awarded over $260 million to develop PCORnet and conduct demonstration research studies using its resources. The funding award has been approved by PCORI’s Board pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract.

PCORI is an independent, nonprofit 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 healthcare decisions.