Patient & Family Partner Program: Stanford Adolescent Young Adult Cancer PFAC

Accomplishments

• A subcommittee of the SAYAC PFAC known as the Squad started an AYA Instagram page @AYA_Stanford.  The SAYAC Squad creates and posts their own videos and stories to welcome and inform the larger SAYAC community.  The Instagram page has over 350 followers locally and nationally.
• SAYAC PFAC hosted three online events during the last year when in-person events were not permitted.  
  • Collaborated twice with the national organization Elephants & Tea focusing on the collected stories and artwork from participants that will be published in a magazine for the SAYAC community as well as new AYA patients diagnosed with cancer.
  • In collaboration with the non-profit organization b-present, hosted an online game night.
• Presented researched information about AYA lounges found at other medical facilities, and successfully advocated for an AYA Lounge in the new cancer hospital.  The new AYA lounge will be designed with input from the PFAC members.
• Helped launch a new clinic in the Hematology Clinic for adult survivors of childhood leukemia.  The GREAT (Getting Regular Examinations After Treatment) Survivorship Clinic helps adults who survived leukemia as children or teens to transition to adult care.
• Participated in The Walk with Me class, one offering of the Stanford Patient and Family Engaged Medical Education program.
  • One-on-one partnership with first year medical students
  • Participated in a lecture on transitions of care where PFAC members shared their experiences with transitioning from pediatric to adult care; transitioning from one geographic area to another; transitioning from active care to survivorship care; and other transitions.  The lecture went so well that the PFAC was asked to present again in FY22. 
• Continued to educate medical staff about the needs of AYA patients.  
  • Staff delivered lectures accompanied by AYAs who talk to attendees about their personal experiences.
  • PFAC medical students and nursing members introduced information about SAYAC services and support to multiple units in both hospitals. 
• Requested and received the donation of a gaming cart that can be used in patient rooms.  The gaming cart is now available to AYA patients, especially those who have long hospitalizations for their treatment.