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.
"Celeste Lee on the Power of Patient Engagement" : Podcast with Dr. Ron Falk
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.
- 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
"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.
Kidney Health Initiative Tribute