About four years ago, my research team began engaging patients and other stakeholders in our research. We work with 24 young people who have type 1 diabetes—as well as their parents, their diabetes-care providers, and representatives of diabetes advocacy organizations.
At first, I was skeptical of the idea of engaging stakeholders. I thought: “What more could this possibly add to my research process?” Within a year of beginning PCORI-funded research, I changed my mind completely. I decided I would never again do research without stakeholder engagement from beginning to end.
My stakeholders are my problem solvers. I can bring them any challenge. They are thoughtful and genuinely want to see research improve the lives of others. A miracle happens when stakeholders hear each other’s perspectives—suddenly the conversation becomes about overcoming the challenge, rather than about the challenge itself.
Within a year of beginning PCORI-funded research, I changed my mind completely. I decided I would never again do research without stakeholder engagement from beginning to end.
Working with stakeholders helped our project focus on research that solves the problems that matter most to patients and families. The stakeholders helped revise our study procedures to better recruit and retain diverse participants, and they provided input on how to successfully implement a complex intervention in two very different clinical settings. In Wisconsin, we successfully redesigned family-centered rounds in children’s hospitals to increase patient safety and family engagement. Another project engaged children with type 1 diabetes and their parents to tailor diabetes self-management resources to the unique needs of each child and family.
In 2013, I became a member PCORI’s Advisory Panel on Improving Healthcare Systems, and I’ve seen the commitment to working with patients and stakeholders take root in clinical research. Patient-centered research benefits everyone. The families that we work with tell me that the experience allowed them to build a fellowship that goes beyond our research endeavors, helping each other with common life transitions, such as getting a child off to college. We’ve inspired the advocacy groups we work with to adapt our engagement approaches, for example, enhancing youth involvement. For me personally, engaging with stakeholders makes me feel more hopeful about the future of our work and increases my desire to push forward.
As I’ve been speaking and working with researchers around the country, I see a shift happening everywhere. The tide of stakeholder engagement is sweeping across research with very positive effects.
Elizabeth D. Cox, MD, PhD, is an Associate Professor in the departments of Pediatrics and Population Health Sciences at the University of Wisconsin-Madison, and a pediatric health services researcher. She currently works with families, patient-centered care advocates, healthcare team members, hospital leadership, and human factors engineers to redesign the rounding process in children’s hospitals to promote family-centered care and enhance patient safety. She also served as a member of PCORI's Advisory Panel on Improving Healthcare Systems.