Stanford Adult CF Patient & Family Advisory Council Initiatives
Cystic Fibrosis
Patient and Family
Advisory Council
“Do you hear the call to serve the CF Community?”
ACFPFC
March 10, 2018
Unrestricted
Mission Statement
•
The Stanford Adult CF Patient & Family Advisory Council
(CF-PFAC) provides feedback to and partners with
members of the healthcare team to improve the
patient and family experiences and care at Stanford
Health Care and in The Cystic Fibrosis Center at
Stanford including pediatric, transitional and adult care
at Lucile Packard Children’s and Stanford University
Hospital.
Cystic Fibrosis Memorial
Space
Purpose:
To have a spot within
Stanford dedicated to those we
have lost to CF
Status:
Instead of a space, a
piece of art in the hospital will
have an associated plaque
dedicated to those CF patients
we have lost. A benefactor has
generously provided the required
funds, and work is being done on
finalizing artwork selection
Next Steps:
Complete work with
Stanford Patient Relations
Services.
Journey to Transplant
Purpose:
To detail the journey from
evaluation, being listed and
ultimately receiving a bilateral lung
transplant.
Status:
Under review for final
publish.
Next Steps:
Project complete
Stanford Hospital and Clinics
Patient Encounters
Purpose:
Capture anonymous
stories from patients on interactions
with healthcare professionals, both
positive and negative, which can be
used as a teaching tool for caregivers.
Status:
Stories have been shared
with Stanford PFAC and there is
interest in expanding this concept
within Stanford
Next Steps:
Identify opportunity
and best approach to expand concept
within Stanford Hospital.
Virtual Clinic
Purpose:
Promote use of virtual
tools to improve quality of healthcare
for CF patients.
Status:
FEV1 study showed that
patients could support activities
associated with virtual healthcare and
would see benefits from doing so.
This concept is being adopted by
other groups so it will happen.
Next Steps
:
Looking for next
opportunity to pilot this concept,
ideally with a partner
Information Sheet on Masks
Purpose:
Develop information
pamphlet on appropriate selection
and usage of masks based on health
status and need.
Status:
Available for patients
Next Steps:
Project Complete
Bodywork and CF
Purpose:
Research how bodywork like
massage and chiropractic can help relieve
CF symptoms, by talking to people with
expertise in the field, and also interviewing
CF patients. Bring together information for
the CF community about easy ways to
incorporate bodywork into their medical
regimen.
Status:
Reached out to several
professionals with interest in the subject,
and currently compiling research on how
massage helps people with CF
Next Steps:
Interview professionals and
CF patients, and compile research into a
document resource for CF patients at
clinic.
Collaboration and Support
Blog/
Website
Patient Only
Facebook Page
Providing
Vision and
Input to the
MyHealth
Development
team
General Stanford
Volunteering
Support
Future Activities
Give us Suggestions!
Council Members
Brian Eddy
CF Adult
Colleen Dun
RRT, RPFT, CCRC
Ed Kinney
Volunteer / CF Groupie
Elyse Goldberg
CF Adult
Shawn Taylor
CF Adult
Jacob Fraker
CF Adult
Olivia Davis
CF Adult
Amy Baugh
CF Caregiver
Join Us
If you hear the call to serve your CF
Community and are interested in
participating in the council please contact
our
Membership Chair Colleen Dunne
@cedunn@stanford.edu
The Stanford Adult CF Patient & Family Advisory Council (CF-PFAC) is actively involved in projects aimed at enhancing the patient and family experience at Stanford Health Care and the Cystic Fibrosis Center. Initiatives include creating a memorial space, detailing the journey to transplant, capturing patient encounters, promoting virtual clinics, and developing information on mask usage. These efforts signify a commitment to improving care and support for the CF community.
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Presentation Transcript
Cystic Fibrosis Patient and Family Advisory Council Do you hear the call to serve the CF Community? ACFPFC March 10, 2018 Unrestricted
Mission Statement The Stanford Adult CF Patient & Family Advisory Council (CF-PFAC) provides feedback to and partners with members of the healthcare team to improve the patient and family experiences and care at Stanford Health Care and in The Cystic Fibrosis Center at Stanford including pediatric, transitional and adult care at Lucile Packard Children s and Stanford University Hospital.
Cystic Fibrosis Memorial Space Purpose:To have a spot within Stanford dedicated to those we have lost to CF Status: Instead of a space, a piece of art in the hospital will have an associated plaque dedicated to those CF patients we have lost. A benefactor has generously provided the required funds, and work is being done on finalizing artwork selection Next Steps: Complete work with Stanford Patient Relations Services.
Journey to Transplant Purpose:To detail the journey from evaluation, being listed and ultimately receiving a bilateral lung transplant. Status: Under review for final publish. Next Steps: Project complete
Stanford Hospital and Clinics Patient Encounters Purpose:Capture anonymous stories from patients on interactions with healthcare professionals, both positive and negative, which can be used as a teaching tool for caregivers. Status: Stories have been shared with Stanford PFAC and there is interest in expanding this concept within Stanford Next Steps: Identify opportunity and best approach to expand concept within Stanford Hospital.
Virtual Clinic Purpose: Promote use of virtual tools to improve quality of healthcare for CF patients. Status:FEV1 study showed that patients could support activities associated with virtual healthcare and would see benefits from doing so. This concept is being adopted by other groups so it will happen. Next Steps: Looking for next opportunity to pilot this concept, ideally with a partner
Information Sheet on Masks Purpose:Develop information pamphlet on appropriate selection and usage of masks based on health status and need. Status: Available for patients Next Steps: Project Complete
Bodywork and CF Purpose:Research how bodywork like massage and chiropractic can help relieve CF symptoms, by talking to people with expertise in the field, and also interviewing CF patients. Bring together information for the CF community about easy ways to incorporate bodywork into their medical regimen. Status: Reached out to several professionals with interest in the subject, and currently compiling research on how massage helps people with CF Next Steps: Interview professionals and CF patients, and compile research into a document resource for CF patients at clinic.
Collaboration and Support Providing Vision and Input to the MyHealth Development team Patient Only Facebook Page General Stanford Volunteering Support Blog/ Website
Future Activities Give us Suggestions!
Council Members Colleen Dun RRT, RPFT, CCRC Brian Eddy CF Adult Shawn Taylor CF Adult Elyse Goldberg CF Adult Amy Baugh CF Caregiver Ed Kinney Volunteer / CF Groupie Olivia Davis CF Adult Jacob Fraker CF Adult
Join Us If you hear the call to serve your CF Community and are interested in participating in the council please contact our Membership Chair Colleen Dunne @cedunn@stanford.edu
