Please explore the new opportunities and resources included in April's Pinwheel Pages!

Don't miss out on this month's Informal Conversation, “Shared Access to Adult Patient Portals: A Vital Tool for Care Partners,” taking place on April 22, 2025, at 12:00 PM ET.

Kind regards,

The IPFCC Team

Upcoming PFCC.Connect Informal Conversation

April 22, 2025 from 12:00 - 1:00 pm ET

Join IPFCC for our next Informal Conversation, Shared Access to Adult Patient Portals: A Vital Tool for Care Partners. Many adult patients have care partners who assist them in managing their care. One valuable tool for these care partners is Shared Access to the patient's online patient portal. Many care partners do not know that this is an option. Learn more about what shared access is; how it can be beneficial to patients and their care partners, as well as to clinicians and staff; what we learned from a shared access demonstration project with three health systems; and how patient and family advisors can advocate for increased knowledge about and utilization of shared access at their health systems. Our presenters, Dr. Cait DesRoches, Executive Director, OpenNotes; Dr. Timothy W. Farrell, Physician Investigator, VA Salt Lake City Geriatric Research, Education, and Clinical Center; Rosie Bartel, MA, Patient Partner, OpenNotes Lab; and Dr. Jennifer L. Wolff, Eugene and Mildred Lipitz Professor, Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health will be sharing their expertise.

Thank you to our PFCC.Connect sponsors!

Join This Inspiring Learning Network for Community Engagement

We invite you to join us in building a network to advance authentic community engagement (CE). The INSPIRE Community Engagement Learning Network will be hosting monthly virtual sessions where participants will engage with both CE experts and people with lived experience, receive presentations on launching and successfully managing CE initiatives, collaborate with colleagues across the country, and build a diverse network of stakeholders in CE. This new community kicks off on 4/23 and is open to those who are leading CE and to those who are curious about getting started. You can learn more and register here: INSPIRE Community Engagement Learning Network - Camden Coalition.

Applications Are Now Open for the 2025-2026 National Consumer

Scholars Program

Applications are now open for the 2025-2026 National Consumer Scholars program! This is a unique opportunity for people with lived experience to build skills through training and peer-learning, connect with peers across the country, and grow skills toward improving healthcare for themselves and their communities. For this year’s cohort, we are looking for people who are eligible for both Medicare and Medicaid (“dually eligible”) and family caregivers of people who are dually eligible and who are interested in building skills and confidence to advocate and use their lived experience to impact healthcare policy. You can learn more and apply here by 5/31. 

If you have questions, you can join their information session on May 12, 2025.

Register here.

Children’s Mercy Kansas City’s FAB/PFAC Annual Meeting 

Since 2008, Children’s Mercy’s Family Advisory Board (FAB) has held annual meetings to showcase the accomplishments of the FAB and the Patient Family Advisory Councils (PFACs) and enhance collaboration between PFACs and the hospital staff. The April 2025 FAB/PFAC Annual Meeting included networking opportunities, two special guests, the Chair of the Board of Directors and the President and CEO, sharing their messages of appreciation for the volunteers, a video showcasing the PFACs’ accomplishments, panel discussions, and podium presentations designed to inspire the PFACs and educate staff about the importance of partnering with PFACs.

Children’s Mercy Kansas City is an exemplary patient- and family-centered care leader expanding their FAB and PFACs during the last 26 years from one Teen Advisory Board to 22 PFACs. The FAB showcases each PFACs, their accomplishments, and outcomes in their Annual Report.

Guidelines for Family-Centered Care in Adult ICUs

The article, "Society of Critical Care Medicine Guidelines on Family-Centered Care for Adult ICUs: 2024" was published in 2025 in the journal, Critical Care Medicine. The COVID-19 pandemic had a significant impact on providing family-centered care in adult intensive care. Recognizing the need to address the challenges, a panel of 28 representatives from several different disciplines and family partners reviewed the evidence for FCC in adult ICUs and provided recommendations for best practices for engaging families in the care and decision-making of their loved ones and supporting staff well-being. Access the article here.

Refreshing Canada's Strategy for Patient-Oriented Research (SPOR)

This report, Pathways to Impact, published in March 2025, describes the refresh process and offers recommendations for partnering with people, communities, and other partners to engage in research. The four new objectives are: Enhance the Relevance and Impact of Research and Advance Health Equity; Integrate Research into Health-System Transformation; Mobilize Knowledge for Effective Intervention; and Sustain and Grow People-Centred and Partnership-Oriented Research. The report includes strategies to effectively achieve the goals to strengthen collaboration in research. While it is a Canadian report, it provides information applicable to anyone interested in improving research partnerships. Access the report here.

Changing the Curriculum to Align with Patient-Centered Documentation

in OpenNotes

In an interview with Dr. Anita Vanka, Assistant Professor of Medicine at Harvard Medical School, she shares how guidelines to encourage medical students and physicians to write patient-centered medical notes were developed. Results from four focus groups were used to create the guidelines that recommend using positive, clear, and respectful language and how to avoid stigmatizing and negative terms.

Access the article here.

2025 IPFCC PINWHEEL SPONSORSHIP – Renew, Upgrade, or Join Now! 

Your support as a Pinwheel Sponsor  assists IPFCC in continuing our work to transform health care by developing and sustaining meaningful partnerships with patients and families in all settings. Pinwheel Sponsor organizations gain national and international visibility for your commitment to patient- and family-centered care. 

We invite you to renew, upgrade, or join today by completing the online Pinwheel Sponsor Application. If you need more information, please contact Sherry Hajec at shajec@ipfcc.org.

Thank You to Our 2025 Pinwheel Sponsor Renewals!

PFCC.Connect

University Health

Hospital/Organization

Akron Children’s Hospital

American College of Radiology

Children’s Specialized Hospital

IWK Health Centre

Luminis Health Anne Arundel Medical Center

Moffitt Cancer Center 

Nationwide Children’s Hospital

Penn State Health Milton S. Hershey Medical Center

Thunder Bay Regional Health Sciences Centre

University of Miami Health System

University of New Mexico Children's Hospital

Wellstar MCG