The speed and spread of medical advances today are of vital importance to us all. Researchers and clinicians are working around the globe and across disciplines to determine prognoses and protocols for individual cases and entire populations. Together they are creating learning networks that help them exchange and evaluate data, disseminate and mine documents, and capture and share insights and plans.
Learning Health Networks were first conceived about a decade ago, at the Institute of Medicine, with the aim of generating and sharing knowledge, in real time, that would improve the understanding, experience, and delivery of quality care. At the time, many saw this as an academic exercise wrapped in a pipe dream. But today, such boundary-busting networks (formal or otherwise) have become key to collaborations that save lives.
In 2009, the National Institutes of Health awarded a major TR-01 grant to fund the design and operation of one of the earliest learning networks, this one in pediatric medicine. I played a significant role in realizing the goals of the Collaborative Chronic Care Network (C3N), which is now part of the Learning Health Program at the James M Anderson Center for Health Systems Excellence at Cincinnati Children’s Hospital.
As a research and design leader of this multi-year grant, I planned and led:
- A medical ethnography of the pediatric gastroenterology healthcare ecology as experienced at hospitals and homes, where my team studied the context, goals, and values of dozens of clinicians and health seekers
- A data synthesis program that yielded personas, activation metrics, health journeys, intervention goals, and system requirements for the design of the network and interventions
- Evaluation instrument design for characterizing about 100 prospective prototypes, including the dozen that were put into production
- System design of a number digital therapeutic products.
Among other products, my team designed and built a health-tracking system to helped patients at home connect with their care teams between appointments in order to share their current condition, their concerns, and useful data. The system also included tools for clinicians and researchers to help patients stay on track and to visualize health information for the benefit of those patients as well as entire populations cared for across the nation.
I carried out this work while serving as Executive Director of an open-science nonprofit called Lybba, which was founded by Jesse Dylan of Wondros. In addition to our NIH work, Lybba teams researched and designed solutions in genomic pathology, shared decision-making, clinical care management, and care improvement networks.
In addition to NIH funds, we earned support from the Robert Wood Johnson Foundation, the Institute for Healthcare Improvement, The California Endowment, LifeTech, Cedars-Sinai Hospital, and others. In the end, I co-wrote influential peer-reviewed papers on research and prototyping methods. published by Journal of Medical Internet Research, here and here.
We also worked with Wondros to co-produce short science documentaries, including a film on how the Centers for Disease Control uses molecular biology to stop outbreaks of contagious diseases. Watch “CDC 24/7” here.
“If we don’t want fear to be contagious–in the same way we don’t want a disease to be contagious–we have to break the transmission.” -Barbara Reynolds, PhD.
Additional research and design credit: Anubhav Jain, Eden Salisbury, Leslie Marticke, and Molly Cooper