In 2007, pediatric gastroenterologists began tracking and sharing best practices as they cared for kids with Crohn’s disease and ulcerative colitis. Their “all teach, all learn” philosophy invited patients and families to participate as key members of the care innovation teams. The results have been astonishing: 82% of patients in the ImproveCareNow network of 100+ clinics are in remission, the vast majority without needing to take steroids.
The Learning Health Network (LHN) model is now being deployed in 286 care organizations across the U.S. as well as in Belgium, Canada, Qatar, and the United Kingdom. Over 500 teams focused on a wide range of health conditions have helped reduce adverse drug events, prevented pre-term births, and decreased complications among patients living with conditions such as kidney disease, heart failure, and juvenile arthritis.
But while LHNs are a model for sharing data and teaching clinicians how to share power with other stakeholders, they are still likely to be led by people with letters after their names (MD, BSN, PhD, MBA, and MHA).
How do these networks fit into the patient-led revolution?
As I wrote in my book, Rebel Health, people with hard-won lived experience do not always wait to be invited into clinical conversations. Seekers go on the hunt for information. Networkers work together to build the communities they need to elevate questions and solutions. Solvers invent what they think should exist and invite clinicians and researchers to learn from their work.
Yet rebels often need traditional institutions to partner with them. LHNs offer a model for how to teach people to work together.
I see LHNs as a magnet, pulling together anyone and everyone concerned with improving care, whether they spend the majority of their time in the C-suite or in the waiting room of their local hospital. We need a whole-community response to our most vexing health challenges. LHNs can help convince people in mainstream health care to change their ways and work directly with patients, survivors, and caregivers.
What do you think? Where else have you seen middle ground being built so that rebels in both the patient AND clinical communities can work with institutions?
“Where else have you seen middle ground being built so that rebels in both the patient AND clinical communities can work with institutions?”
Perhaps here at The Center for Patient Partnerships https://patientpartnerships.wisc.edu/