Pulling Together Around the Patient Experience

Jennie David was diagnosed with Crohn’s disease at 12 years old. That was 18 years ago. When she was a teenager, she got involved with the patient advisory council of a learning health network called ImproveCareNow (ICN) that focuses on pediatric inflammatory bowel disease. In her previous experiences volunteering with research foundations, she felt that patients were treated as afterthoughts. “People were willing to have a patient at the table, but they didn’t really want you at the main table. You were off to the side,” she says. “They wanted us to give lovely emotional speeches, but it felt a little like we...