Effectively establishing PCOR at institutions is beneficial because it promotes a healthy relationship between institutions and communities and is a key contributor to shifting practices to advance health equity. Nynikka Palmer, DrPH, MPH, who led evaluation aspects of the ASPIRE project at the University of California San Francisco (UCSF), has done PCOR in the past where the relationship lasted only as long as a single project.
"As an institution we should have stronger relationships with the community that are not dependent on one investigator. If we have the institutional infrastructure to support this, there is more of a relationship with the institution than just with individuals," Palmer said.
Her team, which also included project lead Tung Nguyen, MD, and project manager Paula Fleisher, MA, leveraged PCORI funding to work with their patient and community stakeholder advisory board and university leaders to establish standards for systematic and equitable engagement. The ASPIRE advisory board, which included patient advisors from underrepresented communities, was especially crucial.
As an institution we should have stronger relationships with the community that are not dependent on one investigator. If we have the institutional infrastructure to support this, there is more of a relationship with the institution than just with individuals.
Along with bringing their voices to institutional leaders to better understand and advocate for needed institutional change, Nguyen credits the board with setting priorities and strategies for ASPIRE and developing a series of recommendations to advance stakeholder-engaged research. Stakeholders also rolled up their sleeves to lead working groups and host sessions at ASPIRE Symposia.
While the ASPIRE project is complete, everyone’s efforts were rewarded by establishing sustainability at UCSF. The university’s Clinical & Translational Sciences Institute is already championing ASPIRE’s work, offering services to move ASPIRE recommendations forward and collaborating with their health system’s patient advisory councils to improve health equity for patients.
Institutionalizing PCOR also fosters patient empowerment by giving ownership of results back to the community.
As the Parkinson’s Foundation’s Karlin Schroeder, MA, said: “It helps people feel more like they are in control of their life and their disease because they can make decisions about what their therapies might look like.”
Schroeder, the foundation’s Associate Vice President of Community Engagement, leads the Parkinson's Advisors in Research and Training Pilot: A Patient Advisory Board Model project. The project is working to create a nationwide standardized model of patient advisory boards (PABs) for patient-centered CER in Parkinson’s disease.
The Parkinson’s Foundation has trained patients, caregivers, and staff to serve on advisory boards at five Centers of Excellence across the nation. Like ASPIRE, these boards will be the main sources of feedback for institutionalization.
“The PABs are helping us build a more sustainable model to train and prepare future advisory boards,” Schroeder said. “They are serving as pilots to help us understand how this will work and what that means for growing the program.”
The Parkinson’s Foundation is already seeing how PABs can promote healthy equity by having diverse representation. It has committed $50,000 per site to engage in CER to put the work into practice.
Principles in Practice
Both project teams have advice to offer for organizations interested in laying the groundwork for successfully institutionalizing PCOR.
To begin, community-engaged work is a long, ongoing process that requires consistent effort. “It’s important to honor what you’re building and keep building on it, strengthening your relationships and building trust,” Fleisher advises.
|Two recent @PCORI-funded Engagement projects present lessons learned on how to utilize stakeholder engagement to build sustainable and successful patient-centered outcomes research. Read more: https://pcori.me/2Xg5uP3||CLICK TO TWEET|
Another crucial aspect is having institutional and community support for prioritizing engaged research. “Our centers’ directors had to be our champions, and they did a great job finding staff who were passionate about patient engagement,” Schroeder said. “Find your champions.” For patient engagement to sustain beyond one project, an organization must be willing to consistently invest in resources.
Finally, organizations must learn how to adapt. In the time of COVID-19, both projects adjusted to new methods of engaging with their advisory boards and addressing communities’ needs.
These projects emphasize the importance of incorporating PCOR/CER into the fabric of their institutions and regularly engaging stakeholders in the research process to ensure a mutually beneficial experience for communities and researchers alike.