The purpose of the e-book is to provide a pragmatic, nine-step blueprint for health researchers to connect with hard-to-reach, vulnerable, and underserved communities to address health issues and ultimately, eliminate health disparities.
Typical research initiatives engage with patients who are actively part of the healthcare system. This book is not about working with those patients. Instead, UPAHEAD focuses on communities that avoid healthcare encounters for a variety of reasons (e.g., health literacy barriers; access barriers; cultural, language, or religious barriers; financial barriers; a general mistrust of the healthcare system). What makes UPAHEAD compelling is that it shares experiences gleaned from a Patient-Centered Outcomes Research Institute® (PCORI®)-funded project that the University of Texas San Antonio conducted within rural, predominantly Hispanic communities. Since the project was a new experience, this book provides a real-life account of “Lessons Learned From Our Project” — a section in every chapter and with every one of the nine steps to a successful research-community collaboration (see sidebar) — that outlines challenges related to engaging with communities that typically don’t engage in health research, how those challenges were addressed, and how, in hindsight, those challenges could have been avoided.
It’s an easy read, even for a non-researcher, like myself. No assumptions are taken, as every model, term, and step are well-defined. For example, “hard-to-reach”, “vulnerable” and “underserved” — which I’ve seen used interchangeably in other literature — are clearly defined upfront so as to understand the factors and barriers in working with communities who do not typically engage in health research.
Yes, this e-book is written specifically about community-partnered research and I was challenged with how to relate some of the research models to my own experiences with medical education, but I also found universal strategies and concepts about engaging with and understanding people and communities before offering solutions. It also made me think about the patients we engage with in our educational initiatives. Is it possible that when we, the medical education community, work with patients in our educational initiatives — whether it be collaborating with patient advocacy groups, filming patient perspective vignettes, tethering patient-targeted education, or providing a platform for patients to speak during live symposia — we are almost always working with patients who are highly engaged, actively involved in the health system, and are from more advantaged backgrounds? Are we doing enough to create and seek out opportunities to partner with patients from hard-to-reach, vulnerable, and underserved communities? Are they equal partners in our educational development, defining the barriers and health challenges that they face and helping us to craft education that affects change?
With UPAHEAD, SOPHE doesn’t just encourage us to look outside of our institution, practice, or building, SOPHE gives us specific tips on how to seek out community partners, how to build trust, how to set priorities, and how to make and achieve goals. By incorporating strategies and tips outlined in UPAHEAD, all stakeholders looking to make a real difference in reducing health disparities may be able to create meaningful partnerships and opportunities to do just that.
UPAHEAD: Nine Steps for Creating Sustainable Research-community Collaborations
Step 1. Understanding community-partnered research: resources and examples of conceptual models
Step 2. Establishing a research team with complementary expertise and planning community partnership.
Step 3. Learning about the partnering community.
Step 4. Identifying a lead community partner and establishing a community advisory board.
Step 5. Preparing for engaging community stakeholders, with a focus on vulnerable populations.
Step 6. Recruiting community stakeholders for group meetings.
Step 7. Eliciting ideas and priorities from stakeholders.
Step 8. Using concept mapping and similar methods for analysis of stakeholder ideas.
Step 9. Developing short-and long-term initiatives