Patient Family Advisory Council Meeting Update August 22, 23, 2019

The Family Commons floor plan is currently in design, with Jason Winkle representing PFAC on design and construction meetings.  Send any feedback you'd like to see incorporated to Jason.Winkle@stjude.org.  The target open date for the space is December, 2020.

The Virtual Advisory Communities have soft-launched and several activities (surveys) have been conducted. PFAC members were encouraged to join and to reach out to PFCC@stjude.org with any technical issues.  (Join here:  https://www.stjude.org/treatment/patient-resources/patient-family-centered-care/volunteer-opportunities/st-jude-voice-virtual-advisor-community.html)

October is PFCC Awareness Month and many fun and informative activities are planned. Members were encouraged to volunteer and help, as schedules allow. Sign up here: https://www.signupgenius.com/go/20f0a4daeaf2ca7f94-pfcc

Security offered active shooter training. Tina Munn, Director, spoke about the new Diagnostic Imaging waiting room enhancements. 

Senior Director of Nursing Clinical Excellence, Camille Filoromo gave updates on the state of nursing and magnet re-application process, as well as asked for feedback on possible new patient gowns that allow for ease of dressing and line changes.

Dr. Santana previously gained feedback from PFAC that results of clinical trials are hard to find and needed.  Working with a team across the institution, St. Jude will now produce a summary of protocol results in layman’s terms.  These will be posted on the St. Jude website.

Colette Hendricks, VP of Clinical Operations presented on project SPARC (Serving Patients and Redefining Care).  A big-picture overview of a new initiative regarding design of outpatient operations was discussed and feedback was gathered.  Staff and parent advisers are encouraged to think big and offer “how can we” ideas. These finding will be implemented in the near future and fully implemented in the new outpatient building that is in planning phase.

Dr. Cyrine Haidar, Coordinator of Clinical Pharmacogenetics, provided a presentation on PG4KDS. Pharmacogenetics is the study of how genes you inherited from your parents affect the way your body handles medicines.  Cyrine sought feedback on the distribution of test results to family members.

Jane Raymond, Director of Managed Care, shared an update on the Community Health Needs Assessment.  A group previously interviewed PFAC and these ideas were incorporated into the aims: access to care, coordination of care, and the health status of children in Shelby County community.

Diane McGarry, manager of Patient and Family Experience, provided ongoing updates regarding St. Jude TV, the Parent App, B-Clinic remodel, and plans for a sick clinic.  Through feedback given on St. Jude Family Voice, Virtual Advisory Community, the sick clinic will now be called Acute Care Clinic.  Diane asked for feedback on 2020 priorities for patient experience. 

Quality of Life Steering Council Updates

Quality of Life parent educators are busy preparing presentations for the 3rd annual Pediatric Palliative Oncology Symposium (PPOS) to be held at St. Jude on September 24 - 26.  Twelve parent educators will be presenting half day preconference workshops and will participate in parent panels and small group discussions during the conference.  This year during the conference, parent educators will be meeting informally at Family Talks with bereaved parents attending from other institutions as well as other attendees.

The Day of Remembrance Planning Committee is busy getting ready for the 2019 event, which will be October 18-19.  Parents can register online through the button below if they are more than 6 months and less than 5 year out from the death of their child.  This year there will be a special remembrance event following the Friday night dinner.

The St. Jude Legacy Voice workgroup is busy working on content for the site.  Any QoL parent advisers who are interested in serving on the workgroup should contact Hannah Crain.

The summer intern for the Quality of Life bereavement program, Austin Darling, began work on a national database of community grief resources that can be used to help support bereaved families.

Andy McCall has joined the QoL SC as its newest member adding both gender diversity as well as the perspective of a bereaved parent of a special needs child.  Andy is also a QoL parent educator.

Family, Guest and Volunteer Services | PFCC@stjude.org