COVER STORY · PATIENT ENGAGEMENT
Pulling Together Patients and Clinicians Are Learning How to Co-Produce
Care Pathways, Outcome Measures, and Clinical Trials By David Raths
J 4
ennie 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 were window dressing. I realized that the only way to change things is through research and through standardizing care.” Her experience with ICN was completely different, recalls David, who now has a Ph.D. and works as a pediatric psycholo- gist at Nationwide Children’s Hospital in Columbus, Ohio. She went to an ICN conference as a college student and felt engaged
with all the participants. “All these people were introducing themselves by their first name and they seemed very interested in hearing more about my story,” she says. “Later on, I was looking through the agenda for the conference and I realized that I was just talking with the people who created and run the network. It was a tremendous culture shock and it felt so different. They really wanted to know what I as a patient would want to have different about my care. And that was tremendously different — that people were paying attention, not just at the conferences, but in between conferences.” Based on her own experience with surgery, she eventually co-led the development of a widely used ostomy decision-making toolkit for other patients who were considering surgery. Patient engagement and “patient-centeredness” are hot topics in healthcare these days, but health systems and clinical research- ers run the risk of alienating patients or having their engagement
hcinnovationgroup.com | SEPTEMBER/OCTOBER 2021
Photo 92356286 © Usataro |
Dreamstime.com
Page 1 |
Page 2 |
Page 3 |
Page 4 |
Page 5 |
Page 6 |
Page 7 |
Page 8 |
Page 9 |
Page 10 |
Page 11 |
Page 12 |
Page 13 |
Page 14 |
Page 15 |
Page 16 |
Page 17 |
Page 18 |
Page 19 |
Page 20 |
Page 21 |
Page 22 |
Page 23 |
Page 24 |
Page 25 |
Page 26 |
Page 27 |
Page 28 |
Page 29 |
Page 30 |
Page 31 |
Page 32
