Experienced Voices Shape Patient and Family Advisory Council

Zakkiyya Phillips and her son, Zavier.

Zakkiyya Phillips and her son, Zavier.

Published in Johns Hopkins All Children's Hospital - Fall 2022

When Zakkiyya Phillips asked to join the Patient and Family Advisory Council (PFAC) at Johns Hopkins All Children’s Hospital, she never realized how her involvement would make such an impact on patients and families. 

“At my first Council meeting, I found myself sitting at the table with nurses who work in critical care and other medical professionals and families who totally understand what I have been through with my son,” she says. “Having a dialog with people who work on the frontlines in the hospital gave me a new and different perspective.” 

The Patient and Family Advisory Council provides opportunities for parents and guardians of Johns Hopkins All Children’s patients, along with teenage patients, to partner with physician and administrative leaders to enhance patient- and family-centered care. Members also provide feedback in key areas, including interactions with the staff and hospital environment and culture.

Phillips is well qualified for the job. Her son, Zavier, was in liver failure at age 7 due to liver hemangioma, a condition in which there were noncancerous masses in the liver made up of a tangle of blood vessels. Fortunately, they found experts at Johns Hopkins All Children's Hospital who were able to diagnose Zavier’s liver condition. Because of their relationship with a pediatric gastroenterologist who worked at Johns Hopkins All Children’s Hospital, the family decided to move from their home in Arkansas to live in Florida, so Zavier could have the best medical care available. 

After a year and a half on the organ transplant list and collaborative care efforts between All Children’s and staff at Jackson Memorial Hospital in Miami, Zavier finally got a new liver at the age of 8 in 2015 at Jackson Memorial. (Johns Hopkins All Children’s does not do liver transplants.) During this time, Phillips kept thinking to herself that surely, she wasn’t the only parent dealing with a very sick kid in need of a support group to help her get through the medical maze. 

This was another reason she wanted to serve on the Patient and Family Advisory Council. “I wanted to be part of this group so other families who have kids suffering from serious and chronic medical conditions can have a smoother journey through the health care system,” she says. 

“During the time I was dealing with my son’s health problems, I never had a strong support system or people around me who were knowledgeable about resources or where you could go to learn more and find things out as it relates to having a sick kid. Not being from this area made it even more difficult,” she says. “As I got more involved with the PFAC, I was asked to be on different subcommittees throughout the organization to give the parent perspective. Along the way, I learned a lot and I think the hospital staff learned a lot from me.” 

Council members serve a two-year term. Meetings are held monthly between September and June to provide feedback about interactions with the staff, environment and the culture of Johns Hopkins All Children's Hospital. They also share feedback and suggestions on a variety of hospital service and quality issues. 

Phillips’ story has several happy endings. First, Zavier is doing very well with his new liver. He continues to be an inspiration to his younger brother and is excited to be a sophomore in high school this fall. And Phillips, who was looking to expand her career in information management, found the perfect job as a programmer analyst with the clinical applications team at Johns Hopkins All Children’s Information Technology Department.

“I was once given advice to work for an organization whose mission, vision and values align with your own. Being part of the PFAC spurred me to want to work at the hospital not just because my kid went there when he is was sick, but because I witnessed firsthand that leadership cares about the wellbeing of not only the child, but the entire family.” 

“People should not feel like their voices and experiences don’t matter. This is a big organization, but the smallest things do matter. Someone is always willing to listen, so use your voice to advocate and see the change that comes with it,” she says. 

And her greatest accomplishment so far from being part of the PFAC? “Participating with the planning and implementation of the new Panda Cares Center of Hope in the hospital’s main campus Outpatient Care Center and watching it come to fruition. “I’m thrilled our voices were heard. It makes me happy every time I go by there, knowing that I had a hand in bringing this about. It’s awesome.” 

To learn more about joining, visit the Patient and Family Advisory Council page.