The Pediatric Experience Collaborative: Paving the Way in Pediatric Experience

Abstract

Positive patient experience is associated with improved patient outcomes, but efforts to improve patient experience are often underprioritized, especially with respect to pediatric care. To address this challenge, leaders at several US children's hospitals established the Pediatric Experience Collaborative (PEC) in 2016 to leverage their collaboration and scale to optimize patient, family, and provider experiences. Since then, the PEC has steadfastly incorporated the patient and family perspective in all its endeavors (e.g., installing a family member as one of the organization's co-chairs); has created both structured opportunities and unstructured opportunities for learning and connection; and has embarked on multi-institutional research among its 20 + members, beginning with a survey on the impact of video visits in the immediate aftermath of the COVID-19 pandemic. Having achieved success through this collaborative model, the PEC is preparing for its next phase of growth by concentrating on three key objectives: expanding the evidence base for best practices in pediatric patient experience (PPX), elevating the national importance of PPX within the healthcare industry, and strengthening the national PPX community.

Introduction to the Issue

Patient experience is closely related to outcomes for patients, providers, and hospitals alike. ¹ Indeed, studies continue to affirm that a positive healthcare experience, typically measured in patient and family surveys, is correlated with improved patient outcomes, a safer hospital stay, and lower provider burnout^1–3; and hospitals whose patients report better experiences boast higher profitability even after controlling for other hospital characteristics. ⁴

Despite this knowledge, efforts to improve patient experience are often under-prioritized and under-resourced relative to other variables that contribute to and reflect an organization's performance and health.

Actionable Insights

Nearly a decade ago, leaders at several US children's hospitals assembled to discuss the state of pediatric patient experience (PPX). They appreciated that the field was missing three elements that had proven crucial to other transformative endeavors in healthcare: the deliberate and fulsome incorporation of the patient and family voice; the sharing of best practices in a collaborative—and not competitive—manner; and the advancement of knowledge through multi-institutional research.

To address these gaps, the Pediatric Experience Collaborative (PEC) was established in 2016 as an informal partnership between patient experience leaders at several leading children's hospitals. The following year, the partnership was formalized through a charter, and membership has since grown to comprise 21 of the largest and most renowned pediatric hospitals from all regions of the United States. The mission of the PEC is to “leverage the advantages of scale by collaborating and sharing expertise, data, and experiences among participating children's hospitals to optimize patient, family, and provider experiences.”

Though we believe this is the first national collaborative exclusively dedicated to improving PPX, we find inspiration in the success of other collaborative learning networks that endeavor to improve pediatric healthcare through close partnerships with patients and families. The collaborative network of the PEC has, in just nine years, made substantial progress in the field of PPX by helping to close the gaps that prompted its creation.

The PEC Elevates the Family Voice

While patients remain the focus, involvement of families is one of the most important factors of a positive experience in the pediatric setting. ⁵ For the PEC, the term “family” is inclusive, encompassing all relatives, caregivers, and others who support patients in their care journeys. To ensure that family perspectives—and those of the patients they support—were embedded in directing the PEC's priorities and initiatives, the collaborative created a paid family co-chair position in 2020 to lead alongside the collaborative's principal leadership positions (Figure 1). In addition to helping set strategic priorities for the organization, the family co-chair liaises with member hospitals’ Patient and Family Advisory Councils to encourage their involvement in the collaborative.

Figure 1.

Diagram of the Pediatric Experience Collaborative’s (PEC's) organizational structure.

To ensure that family perspectives are represented in all PEC forums, the collaborative established a scholarship fund to support patient and family attendance at its annual in-person summits, which are discussed in additional detail below. Further appreciating the importance of financial support, the PEC compensates family advisors appointed to leadership roles in recognition of their time and expertise.

Finally, while the collaborative actively seeks to hear the family voice in collaborative-wide endeavors, it also appreciates that families may wish to have a private space where they can learn from and empower one another. The PEC, therefore, also hosts a subcommunity reserved solely for family advisors (see details in the next section).

The PEC Offers Both Structured and Unstructured Avenues for Knowledge Sharing Among Members

The PEC hosts monthly meetings, serving as structured opportunities to share collaborative-wide updates, hear presentations from member hospitals outlining PPX learnings or tools, and engage in group discussions. Topics have included data transparency, optimizing survey questions, and environment design. The monthly PEC meetings are crucial to fostering the collaborative's culture and building trusted relationships.

More immersive are the PEC's biannual summits—one virtual and the other hybrid—which bring together the organization's national community of clinicians, hospital leaders, and families for deeper and more concentrated learning. Summit themes have included technology, telehealth, and co-design with families; disparities in clinical outcomes and experiences based on race and ethnicity; and, most recently, pediatric behavioral health. The summits, whose average attendance increased by 288% from 2019 to 2024, feature patient and family stories, presentations of best practices from member hospitals, and panels from industry experience leaders, along with group discussions and networking opportunities for interactivity.

The PEC has also created unstructured online spaces called “subcommunities” for members who are engaged in specific domains of the healthcare experience. These role- and topic-specific subcommunities are not oriented around goals or projects; rather, they offer a space without a set agenda for members to voice concerns, solicit feedback, and otherwise build community. Role-based subcommunities include those for Analysts, Clinicians, Families and Caregivers, and Patient and Family Experience Directors; and topic-based subcommunities exist for Diversity, Equity, and Inclusion; End-of-Life Care; Interpretation and Translation; and more.

Also unstructured are the frequent group discussions that take place on an online platform utilized by the PEC to facilitate such exchanges, which have increased by 64% from 2019 to 2024. In addition, the PEC hosts monthly virtual Open Forums, which feature an open discussion in which members are invited to share PPX improvement ideas, offer best practices, brainstorm around shared challenges, and support one another in both challenging and celebratory moments. These Open Forums were originally formed in 2020 in response to the need for real-time collaboration during the COVID-19 pandemic and the national reckoning on race- and ethnicity-based disparities in society at large. In this way, Open Forums are the membership-wide analogues to the more focused subcommunity meetings.

The PEC, therefore, offers both organized and informal opportunities to drive tangible feedback and improvements in PPX by promoting deep and timely knowledge sharing. The variety of avenues of connection is foundational to the collaborative's ultimate purpose: serving as a vibrant network of trusted relationships between clinicians, hospital leaders, and families who are united in the goal of improving PPX across the country. The impact of the PEC on its members is exemplified in testimonials included in the Supplemental Material.

The PEC Conducts Multi-Institutional Research

In addition to sharing existing knowledge, the PEC also helps generate new knowledge by conducting robust multi-institutional research. As telemedicine usage surged during the COVID-19 pandemic, there was much discussion about how virtual modalities were enabling care that was otherwise inaccessible. Beyond access, the PEC sought to understand how the growth in video visits was impacting pediatric providers’ ability to ensure care quality; to complete nonclinical aspects of their professional responsibilities (e.g., teaching and research); and to maintain balance in their personal lives. To evaluate these questions, the PEC developed a survey as part of an Institutional Review Board (IRB)-approved research study. After months of careful iteration, the final survey was distributed to providers across 10 of the PEC's member hospitals, garnering nearly 2300 anonymous responses. The results of this research have been presented at an international scientific meeting and demonstrate the power of the PEC to generate knowledge through its reach and collaboration. ⁶

The spirit of co-design within the PEC extends to the development of the present manuscript—which itself was approved by the Phoenix Children's Hospital IRB (IRB# 24-267)—as members of the PEC's Patient and Family Subcommunity were offered an opportunity to review the work and contribute their insights. The PEC remains committed to engaging relevant subcommunities in future research and writing initiatives to ensure the inclusion of balanced perspectives in all its endeavors.

Practical Recommendations

The PEC has successfully utilized the power of the collaborative model over the past nine years, building an immense pediatric experience network of patients, families, clinicians, and hospital leaders (Supplemental Figure 1).

Eager to continue this momentum and further elevate PPX, the PEC is approaching the end of its 2023 to 2025 three-year strategic plan. Core to this plan are three objectives that reflect practical recommendations: establishing evidence-based best practices, elevating the PPX standard, and expanding the national PPX community.

Establish Evidence-Based Best Practices

The PEC created the Experience Improvement (EI) Committee to establish evidence-based best practices for improving PPX. The EI Committee is fulfilling this strategy by driving collaborative-wide quality improvement projects and compiling quality improvement education resources for its members. The PEC's first multi-institutional quality improvement project has just launched and aims to improve communication between doctors and nurses in the inpatient setting. Using quality improvement methodology, this committee will devise, test, and revise processes that will enhance PPX among the PEC member hospitals (and beyond).

Elevate the PPX Standard

The PEC established the Communication & Education (C&E) Committee to elevate the PPX standard within the larger pediatric community. The C&E Committee is fulfilling this strategy by (1) organizing member hospitals’ recommended PPX best practices and resources into an online library for its members, and (2) increasing the awareness and legitimacy of the PEC within the larger pediatric community through published manuscripts and resource bundles.

Expand the National PPX Community

The PEC's membership has steadily grown since its inception: from 2019 to 2024, the number of pediatric hospitals involved has increased by 33%. Patients and families across the country have benefited from this growth and professionalization, and the PEC will continue to welcome additional hospitals and individual members who are committed to improving PPX through its collaborative model.

The PEC is also committed to expanding the diversity and inclusivity of perspectives represented in its membership. As such, it seeks to ensure that the individuals attending and participating in its efforts accurately reflect the populations that its member hospitals serve. The PEC is therefore working to increase engagement opportunities for all, including those who primarily speak languages other than English. The PEC's PPX resource library, for example, is currently in development with integrated translation features to support broader usability. Efforts are also continually undertaken to recruit a range of healthcare perspectives in the PEC's membership: as of 2025, 59% of the PEC's members held administrative roles at their respective hospitals, 18% were in clinical positions, and the remaining 23% were family members, reflecting a balanced representation of stakeholders. Expanding the perspectives reflected in the PEC ensures the collaborative will continue to evolve as an organization that is co-designed with all who stand to benefit from enhanced PPX.

In addition to ensuring a variety of perspectives among its general membership, the PEC is committed to giving voice to different views within its leadership as well. “Leadership triads,” comprising a patient or family representative along with a nonclinical hospital representative and a clinician representative, guide each of the PEC's committees to give balanced influence over the strategy and direction of the PEC. Each PEC member hospital also utilizes this leadership triad model to organize its respective PEC members vis-à-vis communication and decision-making within the PEC.

Conclusion

Improving the patient experience of care, and specifically that of pediatric patients and their families, continues to pose a challenge that requires concerted effort.

Endeavoring to improve PPX is not only intrinsically ethical, but it also benefits providers and health systems. Addressing factors that contribute to poorer patient experience can reduce provider burnout, improve staff morale, and save healthcare costs. ⁷ More positive patient and family experiences not only correlate with better health outcomes but also with greater profitability and patient loyalty for hospital systems. ⁷ A 2021 systematic review found that patients with positive healthcare experiences are more likely to return to the same hospital's inpatient and ambulatory care settings for future healthcare needs, as well as recommend the hospital to others. ⁸ A positive patient experience has been associated with a lower medical malpractice risk for clinicians ⁹ and may also be associated with a reduction in employee turnover. ¹⁰ From hospital administrators to patients, every participant in pediatric healthcare stands to benefit from improved PPX.

The PEC has been a leading force in PPX through its elevation of the family voice, promotion of knowledge sharing, and execution of multi-institutional research. As the benefits of elevating the PPX gain broader recognition, the PEC will continue to lead, innovate, and deliver on this important work.

Supplemental Material

sj-docx-1-jpx-10.1177_23743735251357481 - Supplemental material for The Pediatric Experience Collaborative: Paving the Way in Pediatric Experience

Supplemental material, sj-docx-1-jpx-10.1177_23743735251357481 for The Pediatric Experience Collaborative: Paving the Way in Pediatric Experience by Lauren Hamilton, Trenton House, Taylor B Sewell, Harris Baden, Brianna Combs, Sara L Toomey, Shehzad Saeed, Jana Rojas, Molly Warneke, Maureen Hoff, Andréa Aken’Ova, Lisa Rubino, Dana Ileana Williams and Samuel P Hanke in Journal of Patient Experience