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PATIENT STORY

Meet Precious McCowan, PhD, a research assistant at the UNC Kidney Center

"Nothing About Us Without Us": A Patient's Journey in Advocacy and Research

2/28/23, 10:00 PM

“And may I share as well, I haven't always been… a confident, activated patient for myself. I experienced low health literacy, especially when it came to kidney disease, because it, you know, it was just sprung up on me and I didn't have the confidence at first to ask questions. To be honest, I didn't know what questions to ask.

That's why I… love the opportunity to be able to mentor individuals with kidney disease and develop tools with these different organizations. I always say one thing to my mentees, always remember, ‘nothing about me without me.’ And that means pretty much, you know, asking your care team to involve you in their plans. Do not make decisions without me being involved, or without considering my concerns.”

Precious’s journey with chronic kidney disease began with a life-changing diagnosis but grew into a powerful calling as she transformed her challenges into purpose—emerging as an inspiring patient advocate and researcher. Her journey has included years on dialysis and three kidney transplants including a joint pancreas transplant. These experiences were both physically and emotionally challenging, but they also strengthened her resilience and sense of purpose. Over time, Precious realized that her lived experiences could help others. This realization inspired her decision to become a patient advocate working to elevate the voices of people living with kidney disease, and to ensure that patients' perspectives are included in every stage of care and research. With inspiration from her time interacting with research as a patient, Precious ultimately went on to pursue a master’s degree and a PhD in human behavior.  


Currently, Precious is a research assistant at the UNC Kidney Center working on the SMaRRT-HD study focused on improving symptom monitoring for dialysis patients. She is also active in patient advocacy on a national level as Regional Leader and Public Policy Co-Leader with the National Kidney Foundation (NKF) helping to elevate patient voices through policy efforts impacting kidney care. Additionally, Precious is a member of the Organ Procurement and Transplantation Network (OPTN) Multi-Organ Transplant Committee and serves on the American Society of Nephrology’s Kidney Health Initiative (KHI) Patient and Family Partnership Council.


“Recently, two fellow PFPC members and I co-developed and submitted a panel proposal to the American Transplant Congress, focused on immunosuppressant medications for kidney-transplant patients, and we were excited to learn it was accepted for the 2026 meeting. This recognition underscores the growing importance of including patient-led perspectives in national transplant conversations, particularly around immunosuppressive therapy, which plays a central role in transplant success and long-term wellbeing. Overall, my work combines lived experience, research involvement, and advocacy to help improve kidney care and the healthcare system.”


Finding Your Voice: Advocating for Yourself and Inspiring Others


Precious remembers when she became very sick and had to begin emergency dialysis, she struggled. She struggled with understanding her treatment plan and what it means to follow a renal diet, but as time went on, she became more involved with her own care through asking her doctor questions and learning more about kidney disease. Precious felt especially empowered when her dialysis nephrologist asked her to become a patient representative, and that outreach thrust her forward into many more opportunities. She refused to let another one of her peers with kidney disease struggle with navigating kidney care management the way she did. As a patient representative at her dialysis clinic, Precious served as the liaison between dialysis patients and the staff with a focus on health literacy, kidney disease, and education. Each month she worked with the social worker and the dietician to host lobby day discussing specific dialysis topics like fluid management and controlling potassium levels.


Precious later became chair of the Patient Advisory Council through the Center for Medicare & Medicaid Services (CMS). She worked with dialysis staff members in creating patient and family friendly educational resources to be shared throughout the country to various dialysis and transplant facilities. Precious also went on to promote patient advocacy with organizations like the American Society of Nephrology Kidney Health Initiative, the National Kidney Foundation, and the American Association of Kidney Patients. 



Living the Data: A Patient’s Role in Writing the Next Chapter of Research


Initially, Precious was more skeptical and distrustful of participating in research due to historical capitalization on the Black/African American community for research like the Tuskegee Syphilis Study. However, research became a part of Precious' life during her time on dialysis when she became involved with Patient-Centered Outcomes Research Institute (PCORI), an online tool to help patients get connected with available research studies by fostering transparency and education.  


As a result of her experience engaging with research as a patient, Precious went on to earn a master’s degree and a PhD in human behavior. She became a researcher in an effort to bridge the gap between lived experiences and scientific inquiry and to ensure that questions being asked and the solutions being pursued truly align with what patients face every day. For her PhD, Precious conducted an independent, qualitative study with African American women who were both family caregivers and patients living with chronic kidney disease. Her research explored their experiences balancing both their healthcare needs and their role as a family caregiver. 


When asked what advice she would give to other patients hoping to become more involved in advocacy, Precious expressed…

“Patients just having a seat at those tables, not just a seat, but a voice, is very important. Whether it's participating in a clinical trial, offering feedback in a qualitative study, or serving on a research advisory board, your voice matters. And even if you're not in a research space…your voice matters. Your lived experience is important, not only to yourself, but the community, and also your healthcare professionals.”

“I would also tell them, too, you know if you want to get involved in research, or even be a part of a patient advisory board for a research study…ask what the purpose is, ask the risk, ask the benefits…feel confident about making informed decisions…asking questions is key, and getting involved is key…That's the only way, you know, we could help improve kidney care and the healthcare system altogether.”


Healing Together: A Patient’s Advice for Building Trust in Care


“The advice I would give to my healthcare providers…trying to build trust [with patients]. I would tell them to, you know, lead with transparency, empathy, and partnership…as patients we are more open to research when we feel seen, when we feel heard, and respected, not just pursued because you're trying to check a box your facility has. So be very open with us, you know, take the time to explain the purpose of the study…the potential risks, the benefits and how our participation could possibly help others. Acknowledge that patients bring expertise based on our lived experiences…when providers genuinely collaborate with us and value our perspectives, trust, you know, it grows and you develop those relationships where the patient feels comfortable asking questions…Do not put us all in the same box. What may work for my friend… who's the same age, same ethnicity, [and has the] same health conditions, may not work for me.”

Helpful Resources for Patients


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