April 2020
Issue 131

IPFCC Events
IPFCC is closely monitoring developments related to the coronavirus disease (COVID-19). The health, safety, and well-being of our conference presenters and attendees are our highest priorities. We are exploring options for how we can convene the International Conference in a way that is safe for all. Please continue to visit our website for updates and contact us if you have any questions.
Cara Coleman Honored at INOVA Award Ceremony
Cara Coleman, IPFCC’s Patient and Family Partnerships Specialist, was presented a Certificate of Recognition in Clinical Teaching at the virtual 2020 Annual VCU School of Medicine/Inova Campus Faculty Award Ceremony for her work with the third year medical students during their Ambulatory Clerkship. Using her extensive knowledge of patient- and family-centered care, she shared her lived experience and directed an interactive case based group exercise showing the students the importance of communication and teamwork among healthcare providers and families in the care of patients with complex healthcare needs.
PFCC in the Field
Children's National Hospital Response to COVID-19
Children’s National Hospital is the only health system in the Washington, D.C. metro area (including MD and VA) specializing in pediatrics. In response to COVID-19, the Executive Committee (including four parents) of the hospital-wide PFAC now meets 1-2 times per week and has reviewed language for the website, signage, and scripts for staff to use when talking to parents about changes in policy.
Resources and Opportunities
COVID-19 Resources and Information
IPFCC’s website includes new information about how to maintain the “essence” of PFCC during the COVID- 19 crisis, including a Frequently Asked Questions document, a list of resources, “Spotlights” of creative strategies used by hospitals and other settings, and free access to two recently-presented webinars. Learn more here.

If you missed the April 14th informal conversation Continuing Conversation on COVID-19: Sharing Current Practices to Support PFCC in Times of Rapid Change or the April 28th informal conversation
Continuing Conversation on COVID-19: Supporting Resiliency in Patients, Families, and Healthcare Staff, you can still access both recordings on the PFCC.Connect library. Become a member today and get access to all recordings and any mentioned resources!

New Report Identifies Health Systems' Priority Research Questions on COVID-19
A new AcademyHealth report identifies the research priorities of the health care and community organizations engaged in the COVID-19 response, and seeks to inform decision-making of federal and foundation funders to guide investments in responsive research. Read the report here.

Bill of Rights to Support Oncology Care
In a March 2020 JCO Oncology Practice journal editorial, “Proposing a Bill of Rights for Patients with Cancer,” the need to develop a bill of rights that supports oncology care that is equitable and of high quality is presented. The authors, who include a patient, propose ten principles to spark discussion and further refinement. “The entire oncology community must now speak up—and step up—for the rights of patients with cancer so that they, their families, and their clinicians can explore and answer these questions with dignity.”

2020 Partnership Award
Is inspiring work to improve health care in partnership with patients and families being done by you or someone at your organization? Submit a nomination for IPFCC’s 2020 Partnership Award! The extended deadline for nominations is June 8, 2020. Learn more here.

Patty black
Remembering Patty Black

This month we take a moment to celebrate the life and legacy of Patty Black, indomitable Patient Leader and senior faculty member for IPFCC. Patty was committed to mutually beneficial partnerships with health care professionals built on trust and respect. Her passion coupled with her kind and gentle manner helped her influence the field through her role modeling and coaching of other PFAs. Perhaps it was her grounding in nature and gardening that renewed her spirit, so she could be so alive and present with each of us.

Read entire remembrance.

Institute for Patient- and Family-Centered Care
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