Family Advisory Council Increases Patient Representation

“The Family Advisory Council (FAC) will never look the same.”

That was the assessment of Beth Moone, patient and family engagement consultant, after the FAC was recently expanded to represent the diversity of our patients and families more accurately.

Thanks to a strategic recruitment plan co-designed with Quality Improvement, Community Health, and Family Relations, we can better engage more families from underrepresented populations. The new recruitment approach is just the first step in making sure all families at Cincinnati Children’s have a voice.

It Was Time

Parents on the FAC have always had a few things in common. They all care. They’re compassionate. They understand the emotional ups and downs parents experience whenever their child has a hospital stay. The FAC has represented families in meaningful ways that have led to improvements and shaped the way we care for our patients and families.

But there were still gaps in representation. Prior to the recent recruitment of the 11 council members, all but one was white.

“Families who have felt marginalized in the past need to feel that their thoughts, opinions and feedback are valued,” said Ndidi Unaka, MD. She and Andy Beck, MD, provide care for Cincinnati families. They co-created a survey and interview guide with the Institute of Patient and Family-Centered Care (IPFCC) to assess facilitators and barriers to diversity and inclusion within patient and family advisory councils.

“Ndidi and I saw an internal story about the FAC,” said Beck. “There was a picture of the council in the story, and we noticed that it wasn’t reflective of the patients we see and care for every day.”

Unaka and Beck reached out to Moone and Dawn Nebrig, director, Family Relations, about the lack of diversity, recruitment and engagement challenges and how a lack of diversity can impact healthcare outcomes for underrepresented populations.

“We knew we probably weren’t addressing the needs or capturing the concerns of all of our patients and families because of the lack of diversity,” said Nebrig. “The co-design meetings we had created a lot of urgency.”

The co-design meetings, conducted over two days in April 2021, allowed team leaders to meet with parents to specifically address lack of diversity and get a deeper understanding of family experiences that influenced engagement. With recruitment ending in September, Moone and Nebrig would need to act fast.

“Some of the parents’ stories made it clear that we needed to do a much better job of making sure underrepresented groups were being heard,” said Nebrig. “We needed to make the change right now.”

Because of the brief time frame for improvement, they decided to focus on one component of diversity.

“Diversity can refer to several different factors, but when most people say diversity, they’re referring to race,” said Nebrig.

Making a Plan

Moone and Nebrig understood previous strategies to add diversity would need to be rethought. They wanted to implement a plan that targeted their desired audience and eliminated barriers to FAC recruitment and participation.

"When it comes to race and diversity, people often talk about hearts and minds, but we needed to treat this like an improvement project,” said Connie Stewart, community engagement consultant and quality improvement analyst. “There’s nothing magical about building diversity in a family council. You need to be direct and develop strategies to reach out to more diverse parents.”

Stewart co-facilitated the design meeting with Nebrig and helped her and Moone set goals and develop strategies to contact prospective council members. Previously, the primary recruiting method involved current members suggesting potential members. Parents agreed that this was the surest way to guarantee engagement because a prospective council member would be more likely to trust someone they knew. However, this resulted in a cycle in which new recruits were racially and demographically similar year after year.

“We just didn’t have anyone on the council that could credibly speak to a prospective council member about how race impacts their healthcare experiences,” said Nebrig. “We needed help.”

Stewart recommended parent Crystal Robinson, who sparked a rapid change in how the FAC looked and recruited. Robinson’s previous experience advocating and providing healthcare resources for Black, White, and Latinx/Hispanic families helped her connect with prospective council members based on a shared understanding of racial disparities in healthcare.

“Parents need to be able to identify with someone in order to trust them,” said Robinson. “If you can’t understand a parent’s day-to-day challenges, then how can they believe you’re going to advocate for them?”

Robinson connected Moone with outside agencies and existing racially diverse councils for prospective members and identified communities where grassroots recruiting might prove beneficial. She also emphasized how critical transparency and acknowledging biases would be for success.

“We should be able to acknowledge how our differences matter and still focus on the things we have in common,” said Robinson. “We all want our children to have healthy and happy lives.”

The improvements in FAC diversity have been dramatic. The council has grown from 11 to 25 members, nearly half of whom are people of color.