Patient & Family Partner Program: Adult Congenital Heart Disease

Mission, Vision, and Guiding Principles

The Adult Congenital Heart Disease (ACHD) Patient and Family Advisory Council (PFAC) aims to improve patient care and outcomes through identifying barriers, collaborative planning with departmental and hospital staff and implementing new methods and programs to potentially help the 2,500+ CHD patients and families cared for by Stanford’s Adult Congenital Heart Program.  The ACHD PFAC is comprised of a diverse group of patients and caregivers who share their experiences and knowledge to guide the improvement work and ensure all decisions encourage patient-centered care.

Accomplishments

• Continued to provide peer-to-peer support to existing ACHD patient mentees, including solid organ transplant recipients.
• Increased percentage of ACHD Program patients registered for MyHealth by 5% (from 67% to 72%), attributing to an overall increase of 21% since 2018.
• With the help of the ACHD Program’s new Administrative Assistant, Natalie La Mariana, Facebook social media page followers grew 50% (250 to 377).
• Collaborated with Adult Congenital Heart Association to host a quarterly series of virtual conversations. “ACHD Conversations” are patient-led, town hall-style presentations that support patients and caregivers impacted by Adult Congenital Heart Disease.  In 2021 topics included post-surgery exercise; multidisciplinary management, preparing for heart transplantation; and mental health.
• Participated in the Northern California Adult Cogenital Heart Association “Walk for 1 in 100” virtual event.
• Invited guest speakers to PFAC meetings to engage members on a variety of topics:
  • Creating educational resources
    Using templates to create resource materials that answer common questions and concerns from ACHD patients and families
    Guest: Jenny Deitsch, DNP, RN - Family Education Program Manager, LPCH
  • StoryCorps
    Introduction to the program and recruitment of PFAC members to create recordings that encourage ACHD patients to participate.
    Guests: Gillian Kumagi and Deanna Beyer - Stanford Health Library
  • Newsletter Development
    How to utilize Constant Contact to develop and distribute PFAC newsletter to patients and families via email.
    Guest: Joanna Truong - Manager Clinical Operation
• Recruited two new PFAC members with wonderful insight and eagerness to contribute. 
• Developed three SMART goals to have a successful upcoming year in 2022!