Background: Capturing diverse perspectives, particularly among underserved populations, is a critical aspect of high-quality research. While these patients are sometimes asked to engage in research when it specifically focuses on one of these groups and the associated health disparities, little evidence exists to support their equitable inclusion across patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) projects. As a result, PCOR/CER often lacks this group’s unique perspectives or, worse, ignores their priorities and needs altogether. This lack of inclusion has the potential to further exacerbate the negative health outcomes and disparities already confronting these populations. There is a need to expand understanding about ways to effectively involve a more diverse group of patients. This project is designed to better understand the needs, barriers, and priorities of underserved patients, and increase this group’s capacity, comfort, and confidence to participate actively in the research ecosystem.
Proposed Solution to the Problem: To begin to close this disparity gap, the project team proposes a solution focused on giving underserved patients and caregivers a voice that meets them where they are—bringing the PCOR/CER ecosystem to them, listening to their needs and priorities, and providing opportunities to engage in dialogue and activities that will further reinforce the value of, and comfort with, their engagement.
This project’s targeted approach addresses the unique motivational and informational challenges that create barriers to engagement for the underserved, specifically low-income and minority populations facing issues of affordability and access. The PAF Patient Network includes 10,000+ individuals who have experienced persistent healthcare access and affordability challenges and are regularly engaged to share their experiences. The team will use this established network of underserved and under-resourced patients and caregivers to expand the engagement capacity of this network into all stages of research.
Objectives: The project’s long-term objective is to increase the capacity of underserved patients to engage in PCOR/CER, specifically by improving trust and motivation to engage with the research ecosystem. This solution will focus on the following Specific Aims:
- Increase patient and caregiver awareness, knowledge, and value of the research process
- Increase opportunities for underserved patients to contribute their voice to PCOR/CER
- Increase effectiveness of dissemination to underserved patient communities
Activities: The project’s two-phase approach will include several activities, many executed in parallel, that together work toward the achievement of the project’s long-term objective.
Phase 1 will focus on developing the approach and messaging content to be deployed in Phase 2. This includes direct gathering of patient information and perspectives to inform prioritized topic areas and specific content, identifying and adapting existing resources required to fill these needs, and adapting/refining the dissemination tool to ensure results sharing is accessible and relevant.
During Phase 2, six to eight unique messages from the previously developed messaging calendar will be deployed to the PAF Patient Network bimonthly over a 12-month period. Outreach will be created in a way that focuses on motivation and trust building within the PCOR/CER ecosystem. When possible, messaging will be interactive (members can engage with the message), bidirectional (members are giving and getting information), and responsive (members get messaging relevant to their identified needs or preferences). Attempts will be made to individualize content when possible to create an even more personal experience.
Projected Outcomes and Outputs: Project outcomes include increasing members of underserved communities’ exposure to, and knowledge of, the PCOR/CER processes, results, and the value of their engagement in the research ecosystem. The team will also increase its organization’s (and the wider field’s) understanding of this group’s needs, perspectives, priorities, and barriers as related to research and engagement.
The significance and impact of these outcomes are twofold. They are the first steps to normalizing PCOR/CER as part of the conversation around health and increasing trust and confidence in engaging with the research process, results, and/or researchers. This will also ensure that future outreach is responsive to community needs and resonates with the individuals receiving the messages.
Patient and Stakeholder Engagement Plan: Patients and stakeholders were instrumental in the proposal and project development. This active and meaningful engagement will continue. The project’s engagement plan included as many different views as possible (given resource and time constraints), while giving individuals the flexibility to choose their level of engagement intensity and time/effort commitment.
The plan includes having two patient co-leads, active involvement of a patient workgroup, and leadership from a multi-stakeholder advisory group. In addition, the team will continue to directly engage with the PAF Patient Network members by collecting data and perspectives (via surveys, micro-polling, and virtual townhall listening sessions) to inform all aspects of the project.