Patient and Family Centered Care SIG

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SIG purpose/mission:
To support individuals and programs that aspire to advance the field of patient- and family centered care through clinical practice, education, quality improvement, and research.

Current SIG goals:
1. Develop and host an engaging, informative, and inspiring workshop at the annual Pediatric Academic Societies meeting that facilitates learning, collaboration, and networking opportunities for SIG members and others interested in patient- and family centered care. 
2. Provide a forum in which SIG members can engage in networking, collaboration, and creation of new PFCC initiatives at local and national levels. 
3. A new strategic goal for the upcoming year is to brainstorm ideas and initiate planning for a longitudinal SIG-wide project that will lead to scholarly output. 

Annual summary:
We had a fantastic workshop at PAS this year, partnering with the Health Care Value SIG in a session entitled “Family- Centered Communication around Health Care Value.”  Dr. Adam Schickedanz opened the session with a talk on financial toxicity and the importance of understanding the sources of financial stressors and the downstream effects on child and community health.  In an hour-long active research presentation, Dr. Alison Galbraith and Rachel Gruver shared their ongoing work in understanding how families use high deductible insurance plans and preferred drug lists to manage costs and the hidden costs that are still present in this system. Additionally, Dr. Jimmy Beck and Dr. Hannah Bassett presented their research on family preferences regarding costs of care discussions during hospitalization.  We were proud to participate in the Health Care Value SIG’s third annual presentation of the “Value of Stories.”  Prior to the session, trainees submitted stories illustrating how costs of care have impacted families they know, have resulted in a change in the care a child received, and how these situations were or could have been remediated.  The top 5 stories were selected for presentation at our PAS session raising issues related to: (1) physician unawareness of costs of therapies, (2) the unseen travel expenses and difficulties families face coordinating care for children with complicated and rare medical conditions, (3) the challenging decisions families are forced to make when health conditions preclude school and work engagement, and (4) conflicting views related to the management of conditions without strong evidence-based practices.   We ended the session with a panel discussion including our research presenters and two family members, Helen Haskill and Tammy Vanderbilt, who responded to questions from the group on how best to engage families in conversations on high value care.  Next year, we look forward to engaging SIG members as we brainstorm ideas and begin planning a longitudinal research endeavor, QI project, or best-practice initiative to enhance PFCC nationally across institutions and lead to scholarly dissemination of this initiative.
Other groups (other SIGs and other groups not in the APA) that work in your area of interest:  

1. The Beryl Institute 
2. Institute for Patient- and Family Centered Care 
3. The Picker Institute 
4. PCORI 
5. Institute for Health Care Improvement




Current SIG Co-Chairs:


Lisa Benz, MD
3333 Burnet Ave MLC3024
Cincinnati, OH 45229
Phone: (513) 636-6544
lisa.benz@cchmc.org

Arti Desai, MD, MSPH
2001 Eighth Avenue
Seattle, WA 98121
Phone: (206) 884-1497
arti.desai@seattlechildrens.org

Rebecca Rosenberg, MD, MPH
530 First Ave
New York, NY 10016
Phone: (212) 263-0959
rebecca.rosenberg@nyumc.org


Current SIG Mentor:


Nancy Spector, MD
635 Sussex Road
Wynnewood, PA 19096
Phone: (215) -76-2525
Nancy.Spector@DrexelMed.edu


 

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