We rely on our Pediatric Family Advisory Council (PFAC) members to do many things. We ask them to identify issues, advise on what needs to change, represent the family voice, support families who are hospitalized and educate those who work here. It’s a big job, and we could not do it without them. Our PFAC holds us accountable, and it is firmly invested in making sure we are living up to our mission.

One important role of a PFAC member is to represent the patient and family perspective on a wide variety of hospital committees. Having a parent with lived experience present who could be part of the conversation was a totally novel idea — met with skepticism — when our PFAC was established in 2008. It took a great leap of faith by our early champions to believe that parent advisers would be able to understand and contribute in meaningful ways. And that the hospital would be better for it.

Through the years, we have continuously worked to place parent advisers on many patient experience and quality and safety committees throughout the Children’s Center. How does this work? We actively recruit parent advisers from our council who have time to join a committee that is meaningful to them. For example, our oncology unit was monitoring the occurrences of central line-associated bloodstream infections and how the vigilant use of antiseptic wipes by patients, especially adolescents, could help reduce infections. PFAC member Kathy Hart joined this committee to offer comments and suggestions stemming from her experience with her son, who spent a lot of time on the unit.

“I am so happy that the PFAC’s commitment to family-centered care even carries over into professional committee involvement,” Hart says. “The idea that the PFAC mission has come so far that parents sit on committees with hospital leaders and medical staff is amazing; it’s a true testament to the value staff see in parent input as they make policy and process changes and improvements. I feel as respected and heard as anyone else on this committee.”

Another PFAC member, Jane Webster, who has been involved in a variety of committee work, says, “As parents, we only see the patient-facing work that staff does and not what goes on behind the scenes each day. Now I get to be a part of that! I also am amazed at the passion and commitment that team members demonstrate, and the genuine concern they have for their patients. I always felt this when our son was a patient, but it’s great to see staff working together at the table to make this happen. I have also seen that there is not always an easy fix or solution but a continued desire to work until there is one.”

When I took this position as parent adviser on the staff of the Children’s Center in 2015, we had roughly 10 parents on 25 different hospital committees. In January of 2020, that had more than doubled. While we faced some setbacks during the pandemic, we have surpassed our record and now have 21 parents on 62 committees. PFAC participation on hospital committees builds trust by promoting a culture of caring and partnership. We are always working to ensure that policies and practices make sense for those they are intended for — and that our patients and families always have a voice at the table.

Sue Mead is a parent adviser on the staff of Johns Hopkins Children’s Center and co-chair of the Pediatric Family Advisory Council. Her daughter was successfully treated for a brain tumor at Johns Hopkins in 2006.