Issue 164 | May 2023

IPFCC Events

Upcoming PFCC.Connect Informal Conversation

June 27, 2023 from 12:00 - 1:00 pm ET

Join IPFCC for our next Informal Conversation: PFAC Diversity, Equity, and Inclusion - Part 2.


During the prior informal conversation in February, we discussed the overall importance of engaging with advisors from diverse backgrounds and how hospitals are defining diversity. This informal conversation will focus on specific strategies to identify and recruit diverse patient and family advisors, as well as the challenges and possible solutions.

Register Here

Thank You to Our PFCC.Connect Pinwheel Sponsors


Seeking Hospital Leaders to Participate in RMHC/UCSF’s Global Survey of Pediatric Family-Centered Care

The Ronald McDonald House Charities® Center at the University of California San Francisco (UCSF) was established in 2022 with the aim to contribute new evidence and facilitate the implementation of pediatric family-centered care and family-centered services globally. IPFCC is partnering with the new RMHC Center to conduct a global survey of hospital leaders’ perceptions of family-centered care practices and policies in their children’s hospital or general hospital with pediatric specialty care. IPFCC is building a list of leaders from North America and globally. “Hospital Leader” is broadly defined and includes executive or administrative leaders, or department/unit clinical directors or managers.

If you would like to ensure that leaders from your hospital are represented, please send names, titles/positions, email addresses, hospital, city, province/state, and country by June 9th to Marie Abraham at If you have questions, contact Marie or Bev Johnson at

Lived Experiences of Patient & Families Improve the Human Experience

in Healthcare

IPFCC was pleased to contribute to The Beryl Institute’s Patient Experience publication, Listening Organizations: Elevating the Human Experience in Healthcare through the Lived Experience of Patient & Families. Experts from around the globe in the field of patient and family partnerships explore what is needed to evolve the role of Patient and Family Advisors (PFAs) so healthcare organizations can learn from their experiences. Contributors identify what they see as gaps in PFA utilization and share their hopes for expanded use in the future. Discover the building blocks for becoming a listening organization and using PFAs as an expanded resource in healthcare improvement strategies.

The Beryl Institute resource is available for purchase here.

Resources and Opportunities

Strengthening Adult Primary Care of Transitioning Young Adults with

Medical Complexity

The George Washington University Fitzhugh Mullan Institute for Health Workforce Equity and The National Alliance to Advance Adolescent Health/Got Transition have released a new report about young adults with medical complexity (YAMC). The report, Strengthening the Adult Primary Care Workforce to Support Young Adults with Medical Complexity Transitioning to Adult Health Care, provides background information about the YAMC population, complex care delivery models, and health care system challenges and offers recommendations to address health care access and delivery system challenges for YAMC as they transition to adult health care.

Access the report here.

New Qualitative Review of Partnerships in Health Services

A team of researchers collaborated with a stakeholder panel of clinicians and patients and family caregivers to develop, "Consumers’ and Health Providers’ Views and Perceptions of Partnering to Improve Health Services Design, Delivery and Evaluation: A Co‐produced Qualitative Evidence Synthesis." Published in the Cochrane Database of Systematic Reviews, this comprehensive review provides information about the study and best practice principles for partnerships.

Access the review here.

Partnering with Patients and Families to Provide Better Care for Everyone

Children's Hospital Los Angeles partners with patients and families through multiple patient and family advisory councils that are grounded in the PFCC core concepts. This article shares some of the work being done by CHLA's councils, including the Center for Healthy Adolescent Transition Advisory Council, the Adolescent and Young Adult Advisory Council, and their Spanish-language council, Consejos Asesor para Familias Latinas.

Access the article here.

Support IPFCC as a Pinwheel Sponsor!

Renew or become a 2023 Pinwheel Sponsor and support our efforts to transform the practice of patient- and family-centered care and ensure that patients and families are essential partners in all settings across the continuum of care. Access the online application here.


If you have questions or thoughts regarding IPFCC’s program areas, please reach out to Bev Johnson at For more information visit our Pinwheel Sponsor Program or contact Sherry Hajec at

Special Thanks to Our New and Renewed 2023 Pinwheel Sponsors!

Akron Children's Hospital

Alliant Health Solutions

American College of Radiology

Augusta University Health

Centre for Addiction and Mental Health

Chatham-Kent Health Alliance

Children's Mercy Kansas City

Children's Minnesota

Children’s Specialized Hospital

Emory Healthcare Inc

H. Lee Moffitt Cancer Center & Research Institute 

Hasbro Children's Hospital

IWK Health Centre

Luminis Health Anne Arundel Medical Center

MHA Keystone Center

Nationwide Children’s Hospital

Penn State Health Milton S. Hershey Medical Center 

Providence Health Care

St. Louis Children’s Hospital

Stanford Health Care

Thunder Bay Regional Health Sciences Centre

University Health

University of Miami Health System

Vanderbilt University Medical Center