The voice of underserved populations is often left out of research.

The PATIENTS Program at the University of Maryland School of Pharmacy in Baltimore is expanding its proven community-academic research infrastructure to impact communities nationally in an effort to change that. 
 
The program has spent more than a decade working in West Baltimore to build health equity. Through its new initiative — PATIENTS Going National, which officially kicked off in December 2024 — the PATIENTS Program will work with population-specific communities that are represented throughout the entire United States.  
 
The communities with whom the PATIENTS Program is seeking to build partnerships are: 

• Black/African American
• Cancer
• Cardiovascular Disease
• Community Clinics, Health Systems, Hospitals
• Disability
• Mental Health
• Older Adults/Seniors
• Reproductive Health Care 

The communities were chosen based on their alignment with the PATIENTS Program’s strategic plan, the reach and size of the community, and the likely impact on advancing health equity. 
 
For the past 13 years, the PATIENTS Program has worked to transform research one community at a time by creating a path for health equity through working with communities of patients, their care providers, and policy makers to help co-develop research. 
 
“The PATIENTS Program has a deep understanding of how to effectively partner with communities using the 10-Step Framework for Continuous Patient Engagement that we developed in 2012,” said C. Daniel Mullins, PhD, professor of practice, sciences, and health outcomes research at the School of Pharmacy and executive director of the PATIENTS Program.  
 
“We have continued to develop the evidence base for what authentic, trustworthy research and community-academic partnerships look like. Other research institutions use our methods and tools for local application of our evidence-based approach to patient-centered research. That motivated us to have a greater national impact by expanding the reach of our program so that many more patients and communities can be healthier because of our research.” 
 
A National Impact on Communities 

PATIENTS Going National will scale up the program’s evidence-based approach for patient and community engagement to increase the reach and impact of the PATIENTS Program to communities in addition to West Baltimore. 

But what constitutes a community? 
 
After speaking with patients, community leaders, advisors, and research participants, the program opted to look beyond geography with its national initiative and to instead look at different types of communities. 
 
The PATIENTS Program uses the term “community” to refer to any way in which patients or individuals come together around something they share, recognizing that despite that common identity the community may — and typically will be — quite diverse. 
 
The PATIENTS Program views communities in this context not as passive recipients of interventions, but rather as active co-developers in the research process through continuous and sustained engagement. 
 
“This approach allows patients and people to identify themselves and their communities rather than be labeled by disconnected outsiders,” said Mullins. “For geographic communities, this avoids labeling people based on their ZIP code. For disease states, this supports patient communities in shaping research priorities and ensuring culturally relevant solutions that reflect the lived realities of individuals facing these challenges. For faith-based and other civic organizations, this leverages individual and organizational influence and ability to mobilize underrepresented communities, especially marginalized communities where trust in health care and research may be low.” 
 
“A community represents a connected group that has a need, is open to actively participating in research with the PATIENTS Program, and perceives the potential for a research partnership with the PATIENTS Program as mutually beneficial,” he added. 
 
Funding Details

PATIENTS Going National has $750,000 in funding from AstraZeneca, Bayer, and Novo Nordisk for capacity building and outreach efforts to effectively partner with communities.  
 
The PATIENTS Program is a recipient of funding from the U.S. Food and Drug Administration, the National Cancer Institute, the National Heart Lung and Blood Institute, the National Institute on Aging, the National Institute on Minority Health and Health Disparities, the Agency for Healthcare Research and Quality, and the Patient-Centered Outcomes Research Institute. 
 
The PATIENTS Program would like to hear from leaders from the eight mentioned communities or obtain contacts from those communities. To connect with us, please email us at patients@rx.umaryland.edu.