Celeste Castillo Lee's Work in Patient Engagement

Celeste Castillo Lee shared her work in patient engagement with the University of North Carolina in October and November of 2016; she gave a presentation at UNC Nephrology Grand Rounds as well as an interview with Dr. Ron Falk in an audio podcast. Celeste shared her personal journey with end stage kidney disease, her path to engagement and advocacy in the kidney community, and her vision for a health care system strengthened by meaningful patient, provider, and staff partnerships. In December of 2016, she gave an interview with Lori Hartwell at RSNHope about choosing hospice. These presentations can be accessed here.

Celeste Castillo Lee's Work in Patient Engagement click to enlarge Celeste Castillo Lee / Photo by Rochelle Moser

About Celeste 

Celeste Castillo Lee is an individual who has battled end stage kidney disease for over 30 years and currently receives in-center hemodialysis. She has been on peritoneal dialysis, hemodialysis, and had a transplant for 10 years. She is a former faculty member for the Institute for Patient and Family-Centered Care and a patient advisor to non-profit health organizations, governmental agencies, research projects, peer mentor and advocate nationally, and internationally; this includes serving as Board Member and Chair of the Patient & Family Partnership Council for the Kidney Health Initiative, a public/private partnership with the FDA and the American Society of Nephrology, a member of the Phase I National Patient Advisory Council for PCORnet, and a member of the steering committee for the Vasculitis Patient-Powered Research Network (V-PPRN). Celeste is the former Program Manager for Patient and Family Centered Care at the University of Michigan Health System where she provided leadership, strategy and implementation of Patient and Family Centered Care philosophies, practice and change. This included administrative and operational oversight for PFCC Program, Adult Services, peer mentor strategic coordination, quality, program development, education, performance improvement, research collaborations with stakeholders, and care models. She is committed to helping health systems, academic medical centers, industry and others partner with patients and families to re-envision the future of healthcare. 

In 2010, when Celeste was the chief of staff to the President & CEO of Duke University Health System part of her responsibility was to collaborate on Patient and Family Centered Care initiatives. She is convinced of the transformative power of collaborations between patients, families, staff, faculty and community stakeholders to drive research forward.

"We Are All In This Together. We Are Better Together" : UNC Nephrology Grand Rounds Presentation

Celeste recorded this one hour lecture on 11/2/2016 at our UNC Nephrology Grand Rounds.

Download video.

"Celeste Lee on the Power of Patient Engagement" : Podcast with Dr. Ron Falk

Celeste Lee on the Power of Patient Engagement
Celeste and Daniel Lee, PhD / Photo by Rochelle Moser

Dr. Falk interviews Celeste Lee in this audio podcast on patient engagement. Celeste is described by Dr. Falk as an "astonishing leader and ferocious advocate for patient engagement," and discusses the process of getting patients to become advocates for their health. She is also joined by her husband Daniel Lee, PhD on a discussion about being a caregiver and including patient engagement in the health system.

Topics include:

  • What is patient engagement, and what it means to Celeste Lee
  • Advice to patients to become advocates for themselves
  • If the patient is the driver how to help physicians know that they are passengers
  • Advice Celeste would have given her 17-year-old self
  • The ups and downs of being a caregiver
  • Educating providers in this engagement approach
  • How to convince patients to want to be peer advisors
  • How to design a health system that includes patient engagement
  • How Celeste's work has helped her in life

Read full transcript and listen to the individual tracks here 


"Choosing Hospice" 
: KidneyTalk Podcast

Lori Hartwell, President and Founder of RSNHope interviewed Celeste in December of 2016 about choosing hospice and how she is preparing for end of life.

Listen to "Choosing Hospice" on RSNHope.

Celeste also recorded a podcast in 2015 for RSNHope on "Defining Patient and Family Centered Care" and wrote this article, "Aging in Dog Years".