FAC YAC Impact Report Sept 2022 - July 2023

The Child Life and Creative Arts Therapy Department

Sept 2022 - July 2023

The Councils at a Glance The Youth Advisory Council (YAC), established in 2015, enhances the delivery of pediatric care by recognizing and addressing the specific needs of our youth population. Now in its eighth year, the YAC is comprised of members ranging in age from 15 to 21. Monthly council meetings, facilitated this term by Morgan Stojanowski, Director of the Child Life and Creative Arts Therapy Department, and Nina Connors, Social Worker, empower members to collaborate on a range of patient-care projects and bring actionable recommendations to improve the patient experience.

The Family Advisory Council (FAC), works jointly with leadership and interdisciplinary staff to ensure the delivery of the highest standard of comprehensive and compassionate health care. The FAC, facilitated this term by Cheryl Strauss, Child Life Specialist, and Andrea Johnston, Senior Parent Advisor, meets monthly to work on a variety of hospital projects affecting the patient and family experience. The group of family advisors represent the collective voice of patients and families in the Neonatal Intensive Care Unit and throughout Kravis Children’s Hospital at large.

Councils Embark on Error Prevention Training In March, the Family Advisory Council and the Youth Advisory Council both received Error Prevention Training from Emma Silverstein, Project Manager, Children’s Health Safety & Quality and Jen Kero, Clinical Program Director, Children’s Health Safety & Quality. The error prevention program, created by Solutions for Patient Safety, is a scientifically proven set of behaviors and communication tools that is known to decrease harm and improve safety culture in a healthcare environment. In the coming months, over 1,500 Kravis employees and partners will complete this training.

Upon completion of the training, family advisors provided stories of their children’s hospital experiences that are relevant to the various error prevention communication tools. These stories will all be used as a vital portion of the staff Error Prevention Training where trainees will have the opportunity to work through and learn from actual patient and family encounters as opposed to fabricated, hypothetical experiences. One advisor shared her great appreciation for the fact that “the hospital recognized the value of the council’s voices and lived patient experiences.”

In addition to the council having the opportunity to positively impact future staff training in this program, the advisors have also gained an excellent understanding of the error prevention toolkit that will improve our ability to engage in all our council initiatives moving forward. Having the lens of the safety communication strategies and protocols will allow advisors to ensure that patient and family education material and patient and family engagement initiatives will all reflect and compliment the safety culture of Solutions for Patient Safety.

Moving forward, a central advisor-created goal for the FAC and YAC, is to inspire and facilitate the dissemination of safety culture to every patient and family that enters Kravis Children’s Hospital. “We hope to foster patients and families as partners in care, ensuring that all patients and families feel encouraged to engage in communication with their providers, and feel safe to raise concerns throughout their healthcare experience”, stated Andrea Johnston, Family Advisory Council Co-Facilitator.

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Unification of the Family Advisory Council Offers a Rich Tapestry of Perspectives The 2022-2023 term marked a milestone event for the Family Advisory Council. After years as separate entities, the Kravis Family Advisory Council and the NICU Family Advisory Council will now serve as one collective advisory group representing pediatrics at large. As such, the council has expanded in both size and scope with approximately 20 advisors now working in partnership to magnify the voice of patients and family members in organizational efforts to improve the hospital experience. In the spirit of building group cohesion and camaraderie in this first term as a unified group, facilitators dedicated time at the start of each monthly meeting for an advisor to share a picture of their family and speak briefly about the healthcare journey that ultimately led to their work on the council. While each Introduction illuminated a uniquely personal story, they collectively highlighted the rich tapestry of perspectives and experiences that the group can now bring to agenda topics and discussions, underscoring the motto that we are “better together.” As the council continues to collaborate with hospital leaders and frontline staff to advance best practices in quality and safety and patient experience, the group, in its current composition, is well positioned to lend their expertise and make recommendations across a broad range of programs and practices. We look forward to welcoming NICU staff to the group in the upcoming term, further diversifying the cohort of staff advisors working alongside family advisors in the council’s efforts.

Introducing Beth Silber, Family Liaison Beth Silber, MPA, is the family liaison at the Mount Sinai Kravis Children’s Hospital. In this newly created role, Beth consults on family-centered care programs by providing family advisor leadership for programs. She also contributes valuable patient and family perspectives on hospital committees, such as the Patient and Family Engagement Steering Committee. After an 11-year hiatus, Beth is excited about her return to the Family Advisory Council as a liaison. As a parent of a pediatric patient, Beth started her role helping parents find their voice and improve the patient and family experience in the oncology clinic at Kravis, as well as being a founding advisor on the Family Advisory Council. Her focus is to advance family-centered care into hospital operating processes and build upon the FAC’s effective communication initiatives. “Working with leadership to explore new areas for patients and families to collaborate in improving experiences at Kravis is very special to me and I am looking forward to getting more involved as new opportunities arise,” she stated. Previously, Beth established the Sala Family Advisory Council at Hassenfeld Children’s Hospital at NYU Langone, composed of families of children with a variety of diagnoses and care experiences. As council chair, she recruited, oriented, and trained new family advisors. She taught health care professionals about the impact of illness on families through the Family Faculty Program. A respected and central voice in safety and quality initiatives, Beth is co-author of the publication, Keeping a Child Safe in the Hospital: A Qualitative Study of Parent Perspectives.

Coming Together In September 2022, the Family and Youth Advisory Councils met jointly with facilitators and hospital leadership for the first in-person gathering since 2019.

Youth and family council members enjoyed the opportunity to reconnect and meet one another in person after two years of virtual meetings. Hospital leadership and physicians attended this event to welcome and celebrate council members’ continued efforts and commitment to improving the patient and family experience at Kravis Children’s Hospital. We look forward to hosting another in-person event next term.

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Patients and Caregivers Commit to Quality and Safety Throughout the 2022-2023 council term, the Mount Sinai Kravis Children’s Hospital’s leadership team continued their commitment to partner with family and youth advisors to design and deliver safe, high-quality care. Various leaders and front line staff attended council meetings and met with advisors to present safety and quality initiatives with the goal of eliciting their valuable insights, perspectives, and recommendations. Topics and areas addressed included: • The 21st Century Cures Act: Parent and youth advisors met with hospital leadership to articulate important

considerations related to the 21st Century Cures Act and how it could impact a patient’s experience of confidentiality and emotional safety as well as the caregiver’s role in navigating their child’s healthcare.

• Rapid Response Team: Quality and safety leaders joined parent advisors to discuss the importance of

creating a direct pathway for caregivers at the bedside to call a Rapid Response alert. As a result, a workgroup was established to operationalize a workflow that supports the caregiver’s ability to directly activate a Rapid Response.

• Pressure Injury Safety Card: The skin team presented a draft of a new pressure injury safety card that

incorporates feedback received from the FAC last year. The cards will be given to patients that are scoring at risk for developing a pressure injury.

• Error Prevention Training: Parent and youth advisors participated in error prevention training and discussed

ways in which the reviewed safety tools empower patients and caregivers to speak up and contribute to an overall culture of zero harm.

• Adult Congenital Heart Disease Transition Program: Members of the adult congenital heart disease team

attended the youth advisory council to present the ACHD transition program in order to elicit feedback related to the transition curriculum and program development.

Actions Toward Advancing Patient and Family-Centered Care •

The Councils provided feedback on several pediatric initiatives including Race, Ethnicity and Language (REaL) data collection, an educational flyer for parents to prepare their children for a Voiding Cysto-Urethrogram (VCUG), an innovative in-room technology platform, and the development of a pressure injury safety card.

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Dr. Courtney Juliano, NICU Medical Director, and Annie Harrington, Clinical Program Director Pediatric Surgery, sought input from family advisors on the “Small Baby Care” initiative, a program designed to improve outcomes for the smallest babies. Advisors shared personal experiences and recommendations, keeping the collective voice of caregivers at the forefront of this work.

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Members of the Youth Advisory Council toured the Child Life Zone to provide their perspectives as plans are made to transform the area which previously served as a Day of Surgery waiting space into a designated Teen Lounge.

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Parents advisors whose children received care in the Neonatal Intensive Care Unit joined leadership from the Child Life and Creative Arts Therapy Department to interview top recruits for a NICU based creative arts therapy position.

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Parent advisors joined leadership discussions focused on a variety of patient facing initiatives and actions, including the re-opening of parent lounges and the development of a pediatric behavioral health pilot.

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Patient and Family Engagement Steering Committee Members

The Councils Welcome New Advisors Dr. Emily Hertzberg is a Pediatric Hospital Medicine attending and Assistant Professor of Pediatrics at Kravis Children’s Hospital, Icahn School of Medicine at Mount Sinai. In addition to her clinical work, she is the Program Director for the Pediatric Hospital Medicine Fellowship, Director of the Care Team Assistant Program, and a faculty lead for HEAL (Health Equity Advancement by Learners). She has a passion for bringing safe and equitable care to patients and families. Dr. Hertzberg joined the Kravis Family Advisory Council in 2023 and she is excited to be part of this important group.

Jill Simeone has been a member of the Mount Sinai Kravis Children’s Hospital Family Advisory Council Family since March 2023. She is the parent of two teens, one of whom was premature and has since been diagnosed with a range of complex illnesses. Ms. Simeone and her family spend a lot of time in hospitals, and she is deeply committed to improving the dialogue between medical professionals and pediatric patients to improve medical outcomes.

Ms. Simeone, an attorney, is a director on the Board of Bakkt, Inc., a financial services tech company. She is also an Assistant Chair on the Board of Trustees for Brooklyn Friends School.

Ms. Simeone was Etsy’s Chief Legal Officer and Corporate Secretary from 2017-2022. Prior to that she held various executive legal roles at American Express, KCAP Financial, Inc., and CEMEX S.A. de C.V. Ms. Simeone received an undergraduate degree from Harvard University and a Juris Doctorate from University of California, SF. She is a Fulbright Scholar, studying international business and law in Mexico.

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Nina Connors, Pediatric Social Worker Stephanie Davila, Pediatric Social Worker Dr. Lindsey Douglas, Chief Medical Officer Victoria Ellsworth, Hospital Administration Dr. Fernando Ferrer, Chief Operating Officer Andrea Johnston, Senior Parent Advisor Jennifer Kero, Clinical Program Director, Children’s Health Safety and Quality Diane Rode, Senior Director, Patient and Family Centered Care Monica Savoti, Director of Nursing Beth Silber, Family Liaison Emma Silverstein, Project Manager, Children’s Health Quality and Safety Morgan Stojanowski, Director, Child Life and Creative Arts Therapy Department Cheryl Strauss, Senior Child Life Specialist Evelyn Zambrano, Parent Advisor

Emilia Kelly, 15, is proud to be a part of the youth advisory council. Emilia, a sophomore in high school, was diagnosed with Crohn’s Disease. For three years, she has been a Mount Sinai Hospital patient undergoing surgeries and infusions.

“This hospital has helped me in many ways and I am very grateful to all my doctors and nurses to make sure I am always feeling my best,” she explained.

Emilia, who lives in New Jersey, plays softball and is able to do all of her favorite things even though there have been setbacks. She added that she has learned “to always keep going no matter how tough things get.” That, she said, is a huge part of her personality.

Emilia expressed that the youth advisory council has helped her connect with other people that understand her. “I am able to share my opinion to try and improve other patient’s experiences at Mount Sinai,” she concluded.

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