Patient Advisory Council Gets a New Start
Patient Advisory Council Gets a New Start
Cincinnati Children’s will be launching an expanded Patient Advisory Council (PAC) this September that will boost diversity among its members and amplify the voice of the patient.
Family Relations’ patient and family engagement specialists Geneita Singletary, Emily Lee and Karla Eysoldt have been working hard on this expansion and are excited about the possibilities for improving the patient/family experience.
“The Patient Advisory Council and the Family Advisory Council, which is made up of parents, were combined into one body when the pandemic first started in 2020,” says Geneita. “We met virtually, and it was great to have that option. But now, with COVID in the rearview mirror, the patients have asked to have their own separate council again and to meet in person. They like to do hands-on projects that are relatable to them.”
Even if you’ve never heard of the PAC before, you’re probably familiar with their work. Through the years, they have been invited by various departments and divisions to give input on projects like new menus in the cafeteria, TV programming in patient rooms and waiting areas, and the design of the new Critical Care Building.
During COVID, the PAC consisted of 11 members between 12 and 21 years of age. Of those, says Geneita, 10 were white, and the 11th did not specify their race. One goal of the expansion has been to increase diversity—not only regarding race, but also gender, age and condition.
“We held three meet-and-greets in April to recruit new members,” she explains. “As a result, we’ve been able to add a total of 18 members who represent Black, Asian and Hispanic ethnicities.”
Diversity of condition is particularly important, says Karla. “One of our PAC members requires a g-tube for nutrition. He has been involved in planning the renovation of the Location D cafeteria, and he asked for a place to rinse out syringes and tubing. Currently, he has to do that in the bathroom, which is less than ideal. Another member uses a wheelchair, and she is passionate about advocating for other kids like her—specifically, asking that we design patient rooms with enough space to allow someone in a wheelchair to move and turn around. These are things many of us would never think of without being educated about them.”
Patient and family engagement specialists (l-r) Karla Eysoldt, Emily Lee, and Geneita Singletary are excited to see what the expansion of the Patient Advisory Council will bring this coming year.
Mutual Benefits
Serving on the PAC is a great help to Cincinnati Children’s for many reasons, but it also benefits the patients in ways that may not be as obvious.
“It’s a great opportunity for the patients to find their voice and co-produce change here at Cincinnati Children's,” says Emily. “Our patients have a lot to say, and I’m excited for their voices to become more integrated and elevated.”
Adds Karla, “One of our members is non-verbal, but she can type, so she shares her opinions. She has told us how much it bothers her when some of the staff only speak to her parents and don’t make eye contact with her. She wants them to see her as a person. The PAC offers a way for her to advocate for herself and other patients like her.”
Patients of Hispanic descent often find themselves in the role of translator for their parents. They live in two worlds—home, where the adults only speak Spanish and adhere mostly to Latino ways, and school, where they speak English and are immersed in American culture.
Says Karla, “Many times, these kids don’t feel like they belong in either world. So, our Hispanic PAC members are excited about being a voice for their parents, who don’t speak English and need help understanding their child’s medical treatment or how to read signage to get to the cafeteria.”
Mainly, the PAC is a safe space for patients to have a conversation about their healthcare experiences and a channel to elevate those experiences that could have been better to those who can effect change.
Says Geneita, “Our goal is to empower them respectfully to give their input into the care they are receiving.”
Many of the PAC members are excited to be able to help other patients and to give back to the place that has been so good to them. In fact, several are currently working at Cincinnati Children’s.
“They are inspired by the healthcare providers they see here, and they say, ‘I’d like to do that myself,’” says Geneita. “Working on the PAC helps them make connections and see opportunities they might not have otherwise seen. So, the PAC actually becomes a career path for them.”
The newly expanded PAC will meet on the third Thursday of the month, starting in September. If you are interested in getting the patient perspective on your department or division project, contact Geneita, Emily or Karla for more information or fill out the online form.
Finding My Own Voice
My name is Anna Schlosser. I’m a 19-year-old resident of North Avondale and student at University of Cincinnati. I’ve been a patient at Cincinnati Children’s all my life, starting with my having jaundice as a baby and then needing eye surgery when I was 2 years old. It was pretty basic childhood stuff.
Then, at age 10, I went into cardiac arrest while playing a game at the North Avondale recreation center. I wasn’t hit. I was standing in a ready position, and then I fell backward. Fortunately, two bystanders performed CPR on me until two emergency units responded and shocked me back to life (the rec center didn’t have AEDs then). The bystanders’ and EMTs’ quick action made a big difference in my long-term outcome. That, and my eight-day stay at Cincinnati Children’s, where I received an implantable cardiac defibrillator.
A few years afterward, I learned I have a genetic condition called Ehlers Danlos syndrome. It affects the collagen in your body and causes joint aches and allergies. I became a regular at a lot of different clinics at the Burnet Campus hospital—Allergy, Gastroenterology, Genetics, Pain Management and more—to manage a bunch of interrelated health issues.
I got involved in the Champions program through Development. Then Beth Moone invited me to become part of the Patient Advisory Council (PAC), which I joined in December 2019, just before COVID hit. We were meeting monthly in person, but once the pandemic was underway, we combined with the Family Advisory Council and met virtually.
I enjoyed being with the parents and learning about their point of view. For example, they were very interested in billing, which I wouldn’t have thought about as a patient. I also wanted to be a good role model for some of the younger PAC members. But I am glad that we are going to get back to having our own meetings and being more patient-centered.
Before COVID, we were involved with the planning of the Critical Care Building. We were brainstorming names of animals that begin with the letter “G,” since the building is known as Location G for wayfinding. It took us about 20 minutes to decide on “giraffe.” And I remember thinking about how we were a bunch of kids from different schools and backgrounds thrown together in a room, yet we worked so well together. And we have fun.
Anna Schlosser shares her experience serving on the Patient Advisory Council at a recent mixer for new council members.
The number-one thing I have learned from being on the PAC is that my voice has power. When I first joined the council, I was one of the youngest members. I had my story—and it’s a big story—but I didn’t really know what to do with it. But since then, I’ve gotten to be part of the Patient Family Experience Committee working on their five-year strategic plan. Being one of two patients in a room of 70 people that included board members, doctors and other high-level executives really cemented the idea for me that patients are valued. Every time we raised our hands, they listened, and I’ve seen those conversations translated into action, which is super exciting.
The PAC is very focused on advocacy, but it’s also a good place to make friends and find that community of people who “get” you. I want to mentor some of our younger members when we start up in the fall.
I’ll be starting my second year of studying nutrition at UC. My goal is to become a pediatric dietitian. Being on the PAC has allowed me to network with staff, and when I’m ready to begin my career, I hope to find a welcome at Cincinnati Children’s.