Gaining Family Input At A Children’s Medical Center

Photograph by Nick Krug

In 2007 Sheryl Chadwick, a volunteer member of the Family Advisory Board at Children’s Mercy Kansas City, attended a meeting called to discuss the medical center’s financial processes. When the conversation turned to the billing system, her personal experience brought a granular level of detail to the discussion.

Chadwick, whose son began treatment at Children’s Mercy in 2000 for acute lymphoblastic leukemia, a bone marrow cancer, suddenly realized during the meeting that the administrators and others present might not have all the information necessary for optimal decision making about hospital bills.

“I said, ‘Wait a minute, have you ever seen a bill that I actually receive?’ And they’re like, ‘No,’” Chadwick said. So she pulled a recent Children’s Mercy bill out of her notebook and showed them the multiple charges for “physician consultation” with no indication of who each clinician was.

“I said, ‘I know which ten specialists my son saw, but I can’t tell based on this bill,’” she explained. “In order for me to pay this bill and say it’s correct, you need to give me more information.”

Not long after that discussion, Children’s Mercy began disclosing more information on its bills, Chadwick said. In her view, the medical center’s willingness to listen and respond indicated the seriousness of its efforts to seek input from a set of stakeholders whose opinions were not solicited or heard often enough: specifically, patients and their families.

‘Game Changer’

Children’s Mercy Kansas City is a highly regarded pediatric medical center with two hospital campuses as well as satellite clinics in both Missouri and Kansas. In fiscal year 2020 it had more than 600,000 outpatient visits and more than 15,000 inpatient visits. It employs more than 8,400 people, including more than 800 pediatric specialists. The initial organization was founded in 1897 by sisters Alice Berry Graham and Katharine Berry Richardson—one a surgeon, the other a dentist—as the Free Bed Fund Association for Crippled, Deformed and Ruptured Children, with a single bed in a women’s hospital. In 1903 Mercy Hospital opened with five beds.

In the past two decades Children’s Mercy has played a pioneering role in pursuing what has become known as patient- and family-centered care—an approach that gained early roots in the pediatric sector. In 1999 the medical center established a Teen Advisory Board, followed in 2003 by its flagship Family Advisory Board. El Consejo de Familias Latinas/Hispanas, an advisory board for Spanish-speaking families, was created a few years later.

By 2007 Children’s Mercy realized that it needed more outside feedback than could be gleaned from the all-volunteer meetings and stepped up its commitment to the family-centered policy.

“The hospital really valued input from that perspective,” said DeeJo Miller, whose daughter had been treated for Burkitt lymphoma at Children’s Mercy. “They recognized that it was only one and a half hours once a month, so they decided that they wanted to have a parent on staff.”

At the time, both Chadwick and Miller put themselves forward as candidates. Both were hired. They started jointly as part-time family-centered care coordinators early in 2008. “We were both in that position in our lives where we were ready to start working again, trusting that our kids were moving forward and at a place for us to be able to do that,” Miller said.

The decision, which president and CEO Paul Kempinski has called a “game changer,” set Children’s Mercy’s effort to strengthen its links to families on a growth trajectory. Today the organization has eighteen patient and family advisory councils that span both clinical domains and hospitalwide concerns. More than 200 volunteers serve on one or more of them. In addition to Miller and Chadwick, who are now both full-time employees, the Patient and Family Engagement Team now includes a director; a medical director; and three additional staff members, of whom two are also parents.

The parents are there to ensure that the hospital takes into account the uncertainty and fear they are often grappling with.

The parents are not there to assess or judge the clinical workforce, Miller said, but to ensure that the hospital is aware of their perspectives and takes into account the uncertainty and fear they are often grappling with. “Our job is not to become medically able to work alongside a respiratory therapist,” she said, but to explain “what it’s like to be a family that doesn’t know the terms you’re using and why you’re coming in the room.”

Intentional And Systematic

The movement toward greater patient and family engagement in health care gained momentum in the 1990s among children’s facilities, said Beverley Johnson, president and CEO of the Institute for Patient- and Family-Centered Care, a nonprofit organization launched in 1992, based in McLean, Virginia. (The institute cites Children’s Mercy and several other centers as examples of well-implemented efforts.) Johnson estimated that around three-quarters of the more than 200 children’s facilities recently surveyed by the organization have institutionalized family input in the form of advisory councils. And the rate among adult medical centers, she said, “is growing.”

A number of factors in recent years have energized interest in the practice of patient- and family-centered care, including greater competition and changes in payment structures. The imperative to seek such input, according to an article published in 2016 in the Journal of the American College of Radiology,¹ “is due, in part, to increasing consumerism in health care and the linking of reimbursement to the patient experience.”

Such engagement is essential if hospitals truly want to learn how to deliver care in a way that meets the needs of those being served, noted a 2015 primer from the American Hospital Association called “Partnering to Improve Quality and Safety: A Framework for Working with Patient and Family Advisors.”²

“Patient and family engagement is no longer a buzzword or fad but rather a strategy that hospitals and care systems have embraced as an integral part of improving quality, safety and patient outcomes,” the primer states. “Beyond involving patients in their own care while receiving treatment, health care organizations that are leaders in patient and family engagement are intentionally and systematically partnering with patients and family members and integrating them as advisors on improvement efforts.”

In some ways, Johnson said, COVID-19 has provided greater incentive for hospitals to receive input from their customer base, and organizations with active patient and family advisory boards have found them to be a key source of information about grappling with the current realities.

“The pandemic has shown that it’s more important than ever to connect with patients from the communities you serve and to understand what’s important to them—what their priorities are,” she said. “How should we communicate with them? Do we use social media, do we use our website? How do you want information, and what kinds of information do you want?”

At Children’s Mercy, some of the patient and family advisory councils are department specific (for example, primary care, cardiac care, mental health, and neonatal intensive care). Others involve specific conditions such as cystic fibrosis, eating disorders, rare conditions, cancer or blood disorders, inflammatory bowel disease, and spinal differences. There are also councils focused on food allergies and tracheostomies.

Carey Bickford’s son Benjamin was born prematurely in 2012 with truncus arteriosus, a cardiac disorder. He spent six weeks in the neonatal intensive care unit (ICU), had multiple surgeries, and is now a “thriving” second-grader, Bickford said. “You go through an experience like that and it turns your whole world upside down,” she said. Joining the Family Advisory Board, she added, “seemed like a natural fit to participate in an organization that had done so much for our family.”

What she hadn’t realized, she said, is that she would get pulled onto such a wide range of projects and committees beyond the immediate scope of the Family Advisory Board. “The real meat and potatoes generally come outside of that,” said Bickford, a former software marketing executive. “I don’t think I realized how much opportunity there would be to stick your fingers into places beyond just those monthly meetings.”

She helped create and served on a cardiac family advisory council. She has volunteered in the neonatal ICU, guiding other parents through the system. Among her favorite projects, given her extensive writing background, was to help research, write, and edit a history of the hospital.³ She has also served on committees charged with analyzing and streamlining various hospital procedures, such as admissions to same-day surgeries. Some months she might spend fifteen to twenty hours on hospital-related activities, but other months she might spend much less, she said.

Terrence Gallagher, an architect and corporate design expert, quit the workforce to care full time for his daughter Elizabeth, who was born in 2000 with multiple developmental disabilities. (Elizabeth passed away in 2019.) He joined the Family Advisory Board in 2009. “I come from a family of volunteers—my father was a volunteer fireman, I’ve been a scout leader for thirty-five years,” he said.

Given his professional background, Gallagher has been consulted on various design projects throughout the medical center. He sat on a “first impressions” committee that sought to render the experience of entering the facility as physically and emotionally appealing to patients and families as possible. “How do we impact families when they walk in the door?” Gallagher said. “That could be anything from greeters at the desk, the flooring—things that enhance the positive influence, not add to their stresses.”

Most recently, he provided input for an overhaul of both the pediatric ICU and the medical center’s cafeteria. For the latter, which should be finished later this year, he advised Children’s Mercy on the importance of creating at least a modicum of privacy for people seeking respite from children’s bedsides or needing to converse quietly.

“A lot of institutional seating turns out like airport seating,” Gallagher said. For the new cafeteria, he said, he advised Children’s Mercy to avoid “rows of tables side by side with each other” and suggested instead “turning and repositioning them so that you may know someone is near you but you didn’t have them in your eyesight.”

In addition to the redesign, the new cafeteria includes a feature promoted by parent input: the opportunity to order coffee or a meal electronically. In many cases, he explained, parents want to get right back to their child rather than having to wait in a long line to choose items and then pay. When the cafeteria reopens, parents will be able to order either from a computer in the child’s room or through a mobile app and then pick up their food or beverage quickly.

“We suggested there’s got to be a better way to have this happen, and the hospital listened and heard and figured it out, and we helped them flesh it out,” he said.

In 2015 Emily Brown brought her two young daughters to Children’s Mercy’s food allergies clinic. Brown had been a schoolteacher but gave up that career when she realized the extent of her daughters’ special food needs and how much time it took her to source products they could eat and then prepare safe meals. Recognizing that others must be in the same situation, Brown created a local nonprofit, Food Equality Initiative, to distribute allergy-friendly and gluten-free products to low-income families.

When her husband was laid off, the family temporarily lost its private health insurance, and Children’s Mercy housed the only local allergy clinic that would accept Medicaid, Brown recalled. “My girls were able to get care there, and I developed a really good relationship with our allergist,” she said. “I told her about my program, and she was so excited.” The clinician joined the board of Brown’s organization, trained her how to read laboratory tests that clients would bring to the group’s food pantry, and invited her to join the food allergies family advisory council.

One of that council’s functions, Brown said, is to reach out to community members, educate them about food allergies, and generate awareness of Children’s Mercy’s clinic. To that end, the council has hosted events such as cooking lessons for children with food allergies and a screening of a Netflix documentary on the issue with the late chef Anthony Bourdain.

Brown also helped spearhead an effort to raise consciousness about allergies across the entire medical center. Kids with allergies visit all departments across the hospital, Brown said, and not just the food allergies clinic.

“One of the negative experiences that several parents had at the hospital was their child being offered an unsafe snack when they’re in a clinic,” Brown said. “We found out there were no policies regarding snacks in clinics.” As a result, Children’s Mercy moved to ban all peanut snacks at all the clinics and to require every clinic to have at least one allergy-friendly snack available.

As with other family volunteers, Brown has found ways beyond participation on an advisory board to leverage her skills and advocate for what she views as priorities. She currently sits on Children’s Mercy’s Hunger-Free Task Force. “Food insecurity was identified as one of the top challenges in the community around the hospital,” Brown said. “I’m able to serve on that committee as a parent, but I can also give expertise as an expert in the field.”

‘Underrepresented Voices’

One challenge has been to achieve sufficient diversity among the family volunteers.

One challenge has been to achieve sufficient diversity among the family volunteers. Finding the time to volunteer can be difficult, Bickford noted, especially “if the person is an hourly worker who would need to take off work.” She acknowledged that “there are currently a lot…of White moms—of me—on the Family Advisory Board.”

Brown, who joined the main Family Advisory Board in 2018, is currently the only Black parent on it. Several other people of color serve on the other advisory councils. Parents with fewer resources are less likely to be able to get away from professional and child care obligations to be able to spare the time to volunteer to be on the boards, Brown said. The Family Advisory Board meets during the middle of the day, she noted, “which probably isn’t conducive to having a very diverse group.” She herself feels an obligation to participate in a range of projects and activities at Children’s Mercy, she said, because she is lucky enough to have a flexible schedule and family support. “I know there aren’t a lot of people that have my perspective and that have the opportunity to engage, or the time,” she said.

In some ways, Gallagher said, the pandemic has created possibilities for attracting a more diverse group, given the increase in virtual meetings. Even when life returns to relative normal, he said, the increased familiarity with connecting remotely to meetings could lead to more people becoming involved.

Information on participants at the first two virtual Family Advisory Board meetings last spring—in April and May 2020—appears to support that possibility, according to an article published in Patient Experience Journal, authored by the Children’s Mercy Patient and Family Engagement Team.⁴ In-person Family Advisory Board meetings generally include lunch and on-site child care. In the fourteen months before the pandemic, attendance among the family members was 64 percent, but during the first two virtual months it was 75 percent, although the difference was not statistically significant. The family members were also comfortable participating actively in the online conversation, the article noted.

The authors concluded that incorporating a virtual option could lead to better volunteer recruitment from “historically under-represented voices from our patient base.” Specifically, they cited those who are “geographically distant, those who have barriers [to] meeting midday, and those who are unable to either travel with their children to obtain childcare onsite or those unable to leave their children with a regular childcare attendant due to a child’s illness.”

Johnson of the Institute for Patient- and Family-Centered Care said that other medical centers reported parallel experiences when they made their advisory council meetings virtual last spring. “They found that virtual meeting attendance was higher and in many ways the discussion was more robust than in meetings at the hospital,” she said. “I think patients and families felt very comfortable speaking up from their kitchen or their living rooms. They were on their turf.”

After a year’s experience of virtual meetings, Miller said the move has had “its advantages and disadvantages.” While it has increased the convenience factor, she said, “we’ve heard from members that they miss the personal relationships and support that are gleaned from meeting in person.” Last year the Family Advisory Board formed a workgroup to focus on increasing diversity among the parent volunteers.

While continuing to pursue that strategy, Children’s Mercy has developed additional ways to reach out and obtain input. Miller and Chadwick have trained a corps of “family experience tracers”—parents who conduct structured qualitative interviews with others currently undergoing their own health care encounters across Children’s Mercy. That effort helps the medical center to access “the voice of those who aren’t able to come sit on an advisory committee,” Miller said.

At a recent virtual meeting of the spinal differences advisory council, Mark Fisher, a Children’s Mercy rehabilitation physician, described the medical center’s adaptive sports clinic and the opportunities and technological tools, such as specialized wheelchairs, that are available so disabled children can participate in athletic activities.

The attendees agreed to draw up a list of questions and concerns specifically related to the needs of the kinds of children attending the spinal clinic. “As a paraplegic, I wish I had had these resources just fifteen years ago,” said Tyler Fix, a council member and a former Children’s Mercy patient. Fisher expressed eagerness for feedback on “gaps we need to fill” to make the program more accessible.

The spinal differences council is one of the newest—established just two years ago at the urging of a few parents. One of them, Kristi Murdoch, had previously served on the neonatal ICU family advisory council. Her son was now almost eleven, she said. “It’s been quite some time since we’ve been there in the [neonatal ICU], so it was time to move on and find somewhere else to give back at Mercy,” she said.

The group had no particular agenda when it formed other than to help Children’s Mercy and the patients who come through its doors, she said: “There wasn’t anything specific that wasn’t great, but it was what could we do to provide feedback to improve things for others.”

And obtaining that kind of inside and user-friendly information is really the point, suggested Carol Kemper, Children’s Mercy’s senior vice president for service and performance excellence. The process of developing the family engagement project, she noted, has been “an evolution” at the medical center.

“Early on, there was recognition that families held incredibly valuable information that was previously missing,” she said. “From a seat at the table in a formalized board, to thousands of engagements every year, patients and families have truly changed the way we prioritize our work and solve problems.”

NOTES

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• 2 Health Research and Educational Trust. Partnering to improve quality and safety: a framework for working with patient and family advisors [Internet]. Chicago (IL): HRET; 2015 Mar [cited 2021 Apr 1]. Available from: http://www.hpoe.org/Reports-HPOE/2015/2015_patient_fam_engagement_FINAL.pdf Google Scholar
• 3 McCormally T. For all children everywhere: Children’s Mercy Kansas City—1897–2017. Traverse City (MI): Chandler Lake Books; 2017. Google Scholar
• 4 Chadwick S, Miller DJ, Taff K, Montalbano A. TeleBoard: the move to a virtual family advisory board. Patient Exp J. 2020;7(2):83–6. Crossref, Google Scholar