Q: Why did you decide to develop this patient engagement framework for your work in Humboldt? How has the framework evolved over time?
Jessica: We developed the framework because of the experience we had with Our Pathways to Health, a program sponsored by the Robert Wood Johnson Foundation to support patients with chronic illnesses in managing their health. The program was incredibly successful and had a robust implementation. Many patients who graduated from the program were very passionate and became peer leaders. We tried to channel their enthusiasm by plugging them into other AF4Q projects without adequate support and planning, which cultivated a challenging experience for all stakeholders. We realized that we weren’t thinking about the skills or training the patients needed to feel successful and empowered in these other programs.
So, the framework came out of the need to support people’s interests and skill sets, and to make appropriate placements with the projects we have based on the skills the projects demand. It also helps to give patients clear expectations of the goals and responsibilities they’re taking on when getting involved in a new project, which we’ve found helps to alleviate a lot of frustration. We felt the need to reflect on how we had engaged consumers in our community and our vision for engaging them moving forward.
We treat the framework as a working document, and we continually refine it based on lessons learned. For instance, in the last six months, we added a piece about organizational readiness because we realized patient engagement isn’t only about patients’ ability to engage in their own health or quality improvement projects. It’s also about how ready an organization is to work with patients on these projects.