Celeste Castillo Lee: A Pioneer in Patient Engaged Care

Celeste Lee spent a lifetime raising awareness and improving the care experiences of patients, especially those living with kidney disease.

Celeste Castillo Lee with her husband Shoou-Yih Daniel Lee

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Celeste Lee, 1965-2017. Celeste simultaneously served as patient advisor, peer mentor, and advocate and board member of numerous non-profit health organizations, professional societies, government and regulatory agencies. The initiatives she spearheaded aimed to raise awareness and improve the care experiences of patients, especially those living with kidney disease.

Celeste Castillo Lee passed away at the age of 51 on February 9, 2017 after nearly 35 years of kidney failure brought on by the autoimmune disease vasculitis and having undergone peritoneal dialysis and hemodialysis and a kidney transplant (for 10 years). Celeste made an indelible mark on everyone who came into contact with her. She was a kind, cheerful, energetic, and passionate force in the lives of her family and friends. She made each of us feel special; we are better persons for having known her.

Celeste’s influence, however, extends well beyond her immediate circle. She helped countless others by devoting her professional and personal lives to developing and promoting strategies so that health care providers could better partner with patients and their families.

A tireless proponent of patient and family-oriented health care, Celeste simultaneously assumed many roles: patient advisor, peer mentor, board member and advocate in numerous non-profit organizations, professional societies, and government agencies.

Among her roles Celeste served as a faculty member at the Institute for Patient and Family-Centered Care, Program Manager for Patient Family Centered Care at the University of Michigan Health Care System, Board Member and Chair of the Patient and Family Partnership Council for the Kidney Health Initiative, and member of the Phase I National Patient Advisory Council for PCORnet.

In 2017, she was awarded the American Association of Kidney Patients Medal of Excellence for her contributions. Her work has been commemorated in several ways, including the Celeste Castillo Lee Endowed Lectureship by the American Society of Nephrology and the National Kidney Foundation’s Celeste Castillo Lee Patient Engagement Award — the organization’s highest honor for distinguished kidney patients who, through their activism and involvement, exemplify Celeste’s legacy of putting patients at the center of all aspects of health care.

Through her participation and engagement Celeste played a critical role in raising awareness and improving patients’ care experiences, a role she assumed up until the very end when, in opting for hospice, she continued to empower and educate others by explaining how she came to this decision. There is no doubt that Celeste’s impact on the quality of patient and family engagement in health care will endure.

Feature image: video still from Celeste Castillo Lee – Kidney Health Initiative Tribute