UMSOP’s PATIENTS Program Expands with New National Partnerships

Through the PATIENTS Going National Initiative, the program has built on its success of co-developing research with communities and advancing their work in the patient-centered research space by partnering with five new national community partners.

Jordan and Anna Rathkopf, Delayna Watkins, Brian Gutierrez, Seantae and Trevor Jackson, Sharon Rivera Sanchez

By Emily Parks
September 9, 2025

Image: Jordan and Anna Rathkopf, Delayna Watkins, Brian Gutierrez, Seantea and Trevor Jackson, and Sharon Rivera Sanchez

The PATIENTS Program at the University of Maryland School of Pharmacy has expanded its evidence-based approach in co-developing research with and providing a voice for the community nationally through five new partnerships that will improve public health outcomes.

The new partners are part of the PATIENTS Going National Initiative, a year-long concerted effort to identify national partners in communities with whom to co-develop research. Through its engagement efforts, the program has solidified these partnerships, which will result in the co-development of future community-engaged research proposals.

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 the 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.

Five New Partners

These five new community partners are members of the cancer, mental health, disability, and reproductive health communities.

The Rathkopfs

Anna and Jordan Rathkopf are an extraordinary visual storytelling duo whose work in photography and film beautifully captures the lived experience of health care, caregiving, and family. Their journey began in 2016, inspired by their personal experience when Anna was diagnosed with breast cancer. In 2024, their work received recognition from the International Photographic Council at the United Nations for Professional Photographic Achievement in Visual Storytelling. Future research proposals will focus on cancer and other communities of interest.

Delayna Watkins, Women’s Wellness Lounge

Delayna Watkins is the founder and executive director of the Women’s Wellness Lounge, a visionary community space committed to transforming how women – especially women of color – experience health and wellness. As a PATIENTS Going National partner, the Women’s Wellness Lounge adds a powerful missing piece: access to resources, support, and national platforms that amplify community health voices. Future research proposals will focus on reproductive health.

Brian Gutierrez, Disability Voices United

Brian Gutierrez is a passionate advocate for spina bifida and colorectal cancer, a dedicated disability resource professional, and a graduate of and seminar leader for the PATIENT Professors Academy. Brian’s personal health care journey has shaped him into a powerful leader in health research, committed to amplifying the patient’s voice. Future research proposals will focus on communities with disabilities.

Seantae and Trevor Jackson, Sandal Blue Foundation

Seantae and Trevor Jackson are co-founders of the Sandal Blue Foundation. The Jacksons share their deeply personal story of survival, healing, and purpose after a devastating car accident that nearly took their lives and changed their family’s path forever. What began as a tragedy has become a mission: to amplify patient voices, improve care, and make sure no one feels alone in their rehabilitation journey. Future research proposals will focus on trauma and mental health.

Sharon Rivera Sanchez, Trials of Color

Sharon Rivera Sanchez, a 10-year Triple-negative breast cancer survivor, is turning her personal experience into a powerful mission. As a five-time clinical trial participant, Sharon founded Trials of Color to confront the systemic barriers that prevent underserved cancer patients from accessing quality health care and participating in clinical research. The organization’s core mission is to bridge this gap, ensuring that clinical trials and cancer research are more inclusive and reflective of diverse populations. By giving a voice to those often overlooked, Sharon is a driving force for equity in the medical community. Future research proposals will focus on cancer.

“One of the ways that we help people is through patient advocacy,” said Seantae Jackson, co-founder of the Sandal Blue Foundation. “The PATIENTS Going National Initiative at the University of Maryland School of Pharmacy has been so exciting because we have the ability to include patients working with researchers and physicians across the United States to have a voice and co-develop research. “That voice is going to impact so many people. What we’re doing as an organization and in partnership with the PATIENTS Program is helping people see that they’re not alone. When we’re creating an opportunity to do research, we’re really tapping into individual feedback, which can shape and form research that is going to help many people.”

Anna Rathkopf agrees. “I love that the PATIENTS program is empowering people, and that’s very important,” she said. “Because as a patient, you feel like the power is taken away from you. Nobody is listening to you. They are telling you how you’re supposed to feel. They tell you, ‘Oh, you will feel this way. You will feel that way.’ Nobody asks you what is going on.”

The PATIENTS Going National Initiative received $750,000 in funding from AstraZeneca, Bayer, and Novo Nordisk to support the capacity building and outreach efforts to partner with these communities effectively.

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 Agency for Healthcare Research and Quality, and the Patient-Centered Outcomes Research Institute.

“We look forward to working with each partner and their community to co-develop patient-centered research proposals,” said C. Daniel Mullins, PhD, professor of practice, sciences, and health outcomes research at the University of Maryland School of Pharmacy and executive director of the PATIENTS Program. “With these new national community partners, we can improve public health outcomes on a national scope.”

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UMSOP’s PATIENTS Program Expands with New National Partnerships