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Going to the Source: Listening to Patients and Families

May 09, 2016

The Poke Plan for Kids Advisory Board member Katie Palermo notes her preference for having her hand numbed before infusions.

Lurie Children’s has a long history of providing patient- and family-centered care, and over the years has created programs to facilitate input and engagement from those served by the hospital. Most notably, the Family Advisory Board and the Kids Advisory Board enable patients and parents to play an essential role in driving innovations that shape the patient and family experience at Lurie Children’s.

Insights from parents

The Family Advisory Board, currently led by parent Erika Holliday, was established in 1992 to recognize the partnership between parent advisors and hospital leadership. Comprised of parents whose children receive ongoing care across multiple services, the board members work with hospital staff to help shape practices, programs and policies for achieving patient- and family-centered care and service. Meeting monthly, the group of 12 members discusses or reviews plans on hospital initiatives as wide-ranging as online bill-paying procedures, telemedicine programs or new quality and safety initiatives.

One care initiative currently being implemented across the hospital received formative feedback from both the Family Advisory Board and the Kids Advisory Board. The Poke Plan is a written plan in the patient’s electronic medical record that provides preferences and choices for any type of “poke,” including blood draws, IV starts, immunizations and port access.

It was developed through an interdisciplinary collaboration led by the Child Life department in consultation with Mott Children’s Hospital at the University of Michigan. The Poke Plan is a way to make necessary pokes less painful and anxiety-ridden for patients by honoring their preferences for comfort measures and pain management, right down to specifying the size of the needle and favorite videos for distraction.

“I loved having the opportunity to help develop the Poke Plan because it directly affects my daughter,” says Linda Sordilla, Family Advisory Board member and mother of 7-year-old Eva, who has been treated at Lurie Children’s for multiple congenital anomalies, including tethered spinal cord, since she was two days old. “A child who needs her blood drawn is stressed, and it really helps make the appointment go smoother when the staff knows her preferences in advance.”

The E-advisor community

Another recent innovation to secure input from patients and families is the formation of an online community known as the E-advisors, who accept invitations to review draft materials, such as frequently used medication handouts from the Emergency Department, and then provide feedback by responding to brief surveys. “This is a great way to get useful information efficiently from as many families as possible in the way that’s most convenient for them,” says Barbara Burke, Senior Director of Patient-Family Experience in the Center for Excellence at Lurie Children’s and the staff liaison to the Family Advisory Board. “We make changes based on the feedback received, and then we can literally put the ‘family stamp of approval’ on it.”

Patients—the most important stakeholders

The Kids Advisory Board represents the most important stakeholders of all: the patients. Since 2006, the group, similar to a “student council” from diverse backgrounds and medical experiences, has been providing invaluable feedback on care and facilities to hospital leadership and clinical staff. During the design and planning phases of the Lurie Children’s facility, the Kids Advisory Board gave critical feedback about many aspects of design. They identified the need for “destination spots” that kids could visit during long hospitalizations, resulting in the gardens on the 11th floor, as well as the hair salon in the Panda Cares Center of Hope (formerly the Family Life Center).

In monthly meetings, the group shares their perspectives with hospital leaders, front-line staff and consultants on such topics as “green” hospital initiatives or patient safety measures, proposed Panda Center activities and the hospital’s food service menu. They also meet once a year with the Chief Residents and representatives from each resident class to share the patient side of medical interactions, with insights that help inform the residents.

“When you go right to the source—your patients—you get honest, constructive and timely feedback,” says Lisa Mulvaney, Creative Arts Program Coordinator and the staff liaison to the Kids Advisory Board. “The kids have things to say, and they take their responsibility to represent patients seriously.”

The kids go to Washington

The Lurie Children’s Kids Advisory Board doubles as the Chicago chapter of the International Children’s Advisory Network (iCAN), which was formed to bring together youth members and their parents from around the world to share their experiences and engage with world leaders in medicine, research, innovation and advocacy. Last summer, two members of the Kids Advisory Board traveled to Washington, D.C., with their parents and Susanna McColley, MD, Director of Clinical and Translational Research at Lurie Children’s, to an iCAN conference. There, they met with researchers and regulators seeking feedback and advice from children and their families on pediatric issues.

Whether discussing the food served in the hospital cafeteria or federal research policy, the Family and Kids Advisory Boards provide valuable feedback to continually advance pediatric medical care.

This article was originally published in the Spring 2016 issue of Heroes magazine.