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+ […]
ImproveCareNow
Public Q&A: Human-centered design
A community colleague recently tweeted an intriguing question: “Looking for a rec! Our grant team would like to have more knowledge & training around #HumanCenteredDesign for research & community engagement. Does anyone have #HCD trainings, modules, or programs they love?” She tagged a few people, including me, and a public conversation ensued. People shared resources, […]
Peer health playbooks
I’m collecting examples of peer health playbooks: the how-to guides that patients and caregivers write so that people following their path won’t stumble into the same pitfalls. If you know of one that is not listed below, please tell me about it in the comments. I AM ALS put together a step-by-step playbook of how […]
Public Q&A: Patient registries
A community colleague asked for advice about how an organization can boost the signal for their patient registry. Recruitment levels are not what they expected and nowhere near what they need. I’m sharing what I wrote back so that others can chime in with their advice in the comments. First, look at what successful registries […]
Recent Comments