ACFAC 05-24-2016 Meeting Minutes
Members Present: Angel, Devin, Larissa, Linda, Brian, Colleen, Jay,
April Minutes Adopted
A. CF Education Day Feedback: Colleen shared results from CF Ed Day. Very well attended. They had a Spanish interpreter. Some people thought it was the best CF Ed Day ever.
B. Patient Survey: Brian posted the survey on the Patient Only Facebook Page. Feedback extremely light. Waiting to see if we collect more feedback.
C. Virtual Clinic Proposal / Online Collaboration: Virtual Clinic Visits. Stanford currently has a pilot in the works. Brian has reached out to see if we can participate in a pilot run but has not received any feedback. Thinking about changing directions and contacting the companies who sell the at home lung function test. Researching to see if the device can work with a Virtual Clinic Visit and how a patient would upload their PFT score. Larissa volunteered to help Brian with this project.
D. CF Encounters: Devin will follow up with Jennifer and Julian at his next clinic appointment for input. Devin to write up status on project for another council member to pick up the project.
E. Informational Sheet on Masks: Devin sent a draft of the Informational Sheet on Masks to all council members. Clinic needs to review and finalize it. Once list is finalized making it available on the Patient Only Facebook Page. Larissa volunteered to assist with this project.
F. Issue Management Decision Tree Brochure: Jay emailed Proof#01 Inpatient Brochure to everyone for feedback.
G. Passport (Card used for CF Advocacy for other Clinic/ Er Visits): Linda and Angel sent out Proof#01 of the Adult Cystic Fibrosis Passport to the council for feedback. Jay is working adding the ACFAC logo on the passport. Linda is currently working on the idea of making the passport Mobile Friendly. Feedback Received:
Elika via email “ the approved isolation for CF patients is Contact only: gown and glove for providers. Droplet is only for cases of suspected viral infections (fle etc) and should be determined by the physician/NP. Remove “Droplet” and Mask”. For the contact phone number add daytime 7am – 5pm contacts as the CF Ghost Pager and Plumonary Consult Fellow only for issues after 5pm."
Angel spoke to Dr. Mohabir regarding the Adult Cystic Fibrosis Passport. First off he loves the idea and thinks it will be a great resource for CF Patients. Regarding the “masks” the hospital policy embedded multi infection control deemed masks not recommended for a provider to wear. The only reason a provider would wear a mask is if the patient had a virus “Droplet”. If a patient wants to wear a mask during their clinic appointment that is fine, but Stanford Policy does not recommend the provider to wear a mask".
H. Coordination with CFF and External Clinic Development: Follow up next meeting.
I. RPQ / MyHealth: Jay submitted the latest RPQ Form to Christian at MyHealth. No response back.
J. Clinic Patient Opportunities: Send Brian Baseline Determination Article. Work with Carol Powers on gathering a list of the latest treatment supplies, devices, etc.. quarterly to provide a list for patients so they know the new and exciting items for their CF Care. Publish in CF Newsletter.
File Storage Recommendation: Joan mentioned via email they are making progress toward getting volunteers (patient and family partners included) access to the Stanford Box.
Action Items:
Jay: Post RPQ Form on Patient Only Facebook Page.
Devin: Email Larissa the Draft on the Informational Sheet Draft on Mask..
Angel: Post Outpatient Decision Tree Brochure to Patient Only Facebook Page to see if patients have grabbed their copy of the brochure.
Angel : Post the Prescription List of medicines approved by Elika to Patient Only Facebook Page so patients know what medicines to bring when in house.
All: If anyone notices a general question posted on the Facebook page and you feel needs more information, share it with the council.
Meeting called to a close at 6:20pm.
Next Meeting June 28, 2016
Monday, May 30, 2016
Friday, May 27, 2016
Hello ACFAC
hi ACFAC
http://5stepstothetop.com/grain.php?busy=u1wg5cha32by5
mrs.harrington@sbcglobal.net
mrs.harrington
http://5stepstothetop.com/grain.php?busy=u1wg5cha32by5
mrs.harrington@sbcglobal.net
mrs.harrington
Tuesday, May 17, 2016
May Agenda
Stanford Adult Cystic Fibrosis Patient Advisory Council
Date/Time: Tuesday, May 24,
2016, 5:00pm-6:20pm
WebEx members should get set up 10 minutes
before the scheduled meeting time using the link provided in the green button
on the WebEx dialog below or the link at the bottom of the form. It is recommended you call in for audio as
opposed to using your computer.
Advisory Council visitors are welcome. Attendees must respect the Stanford CF Center
cross infection guidelines. Please do
not attend in person if you have an active viral infection or any other
contagious condition.
Please have
this copy of the agenda and attachments with you during the meeting.
Agenda
1. Introduction
(5:00 – 5:10)
2. Adopt April
minutes (5:10)
Please review
Angel’s minutes on the blog or via her email previously sent to you
3. Report on CF
Education Day (5:10-5:15) – Colleen
4. Project
Update (5:15 – 5:50)
a. Patient
Survey – Brian
b. Virtual Clinic
Proposal/Online Collaboration – Brian
Action Items : Brian to provide update on status
Action Items : Brian to provide update on status
c. CF Encounters
– Devin
Action Items : Collect feedback from Jennifer & Julian and Joan with clinic input; Devin will work on a paragraph to go into the next Newsletter and provide to Zoe
Action Items : Collect feedback from Jennifer & Julian and Joan with clinic input; Devin will work on a paragraph to go into the next Newsletter and provide to Zoe
d. Informational Sheet on Masks – Devin
Action Items : Complete Documentation
Action Items : Complete Documentation
e. Issue
Management Decision Tree – Angel/Monica/Jay/Elika
Action Items : Capture input for inpatient decision flow for inpatient form. Initially work with contact from Jay.
Action Items : Capture input for inpatient decision flow for inpatient form. Initially work with contact from Jay.
f. Passport (card used for CF advocacy for other ER
visits) URLs – Angel/Linda : Angel to capture information to be posted and develop a proof.
g. Coordination
with CFF and external clinic development – Shawn
h. RPQ/MyHealth update – Jay
Action Items : Jay emailed the RPQ Form to Christian to be included with MyHealth for digital download/upload. Christian will contact us once they get further along.
Action Items : Jay emailed the RPQ Form to Christian to be included with MyHealth for digital download/upload. Christian will contact us once they get further along.
i. Clinic-Patient Opportunities –
Angel/Monica/Elika
Action Items : List to be reviewed and documented for future use, at minimum posted to Facebook page.
Action Items : List to be reviewed and documented for future use, at minimum posted to Facebook page.
5. Action Items
(5:50 – 6:00)
a. Joan – update on file storage recommendation
b. Jay – Will distribute ribbons for Volunteer
badges
6. Reminders
a. Publicize council
and council activities
b. Continue to complete volunteer requirements
c. Future Projects
Hospital RPQ
Hospital RPQ
CF
Patient Medical Compendium
7. Final
Comments/Discussion (6:00 – 6:10)
Next meeting June 28, 2016
Next meeting June 28, 2016
8. Closed Session
(6:10 – 6:30)
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Administrator
invites you to this meeting.
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Tuesday, April 26, 2016
"04-26-2016 Meeting Minutes"
ACFAC 04-26-2016
Members Present: Brian, Jay, Linda, Angel, Ed, Shawn
Guest: Joan Scott, Julian Liang
February Minutes Adopted
A. CF Education Day Feedback: Follow up next meeting.
B. Patient Survey: Brian posted a rough draft of the Patient Survey on the ACFAC Only Facebook Page. He is still gathering feedback. Once rough draft is finalized Brian will post the Patient Survey to the Patient Only Facebook Page. Goal is to see how may responses we receive and what information we can gather from the survey. Patient confidentially is most important when we receive responses from patients.
C. Virtual Clinic Proposal / Online Collaboration: Brian received IT contact information from Joan. Brian will contact IT to find out more about the current pilot run of the online virtual clinic at Stanford and how we can participate.
D. CF Encounters: Follow up next meeting.
E. Informational Sheet: Follow up next meeting.
F. Issue Management Decision Tree Brochure: Outpatient Brochure is available at CF Clinic. Angel will post the Outpatient Brochure to the Patient Only Facebook Page to see if patients have grabbed their copy from clinic. Find out if the patients are finding the brochure as a useful piece of resources. Proof#01 of the Inpatient Brochure will be sent out before the next meeting. Goal is for the Inpatient Brochure to be apart of a Inpatient Packet.
G. Passport (Card used for CF Advocacy for other Clinic/ Er Visits): Angel picked up a Pediatric Passport at CF Ed Day. Angel will call the clinic phone to see what the message states regarding the phone number to contact for the Pulmonary Fellow On Call. This information will go on the back of the Passport. Linda will look into the idea of making the Passport Mobile Friendly. The Pediatrics Clinic has an English and Spanish Version. Angel will contact Meg to see if the Adult Clinic needs a Spanish version. Joan mentioned once we know the different langues she can help us translate the verbiage for the passports.
H.Coordination with CFF and External Clinic Development: Shawn will be sending the council an email on how CFF is putting everything in the works.
I. RPQ / MyHealth: Jay has not heard back from Christian regarding uploading the RPQ Form to MyHealth. He will follow up with Christian.
Jay showed everyone via Webex the new ribbon he has been working on. It looks awesome. He will work with Joan to figure out how to mail them out to the council members.
J. Clinic Patient Opportunities: Facebook Topic determine which medicines aren't available during a hospitalization and what the process should be for patients when using their own medications from home. Elika's response "The general rule is that if it's super expensive and difficult to get medication, bring it. Having said that some pancreatic enzymes which are not available don't fall into this category. For simplicity we can use this list of unavailable meds, with the caveat that it can change with time: Xopenex; Kalydeco, Orkambi, Pancreaze, Ultresa, Pertzye and Symbicort. Anything else that is not commonly used will need a case-by-case discussion."
Angel will post response to the Patient Only Facebook Page. In the future this will be part of the inpatient packet along with the inpatient brochure.
File Storage Recommendation: Joan is still working on it.
Joan will follow up with Mary on the status of the councils volunteer requirements. Remember all council members to login in your volunteer hours.
Action Items:
Devin: Feedback from the clinic CF ED Day Martch 8th CF Encounters Project.
Angel: Post Decision Tree Brochure to Patient Only Facebook Page to see if patients have grabbed their copy of the brochure.
All: If anyone notices a general question posted on the Facebook page and you feel needs more information, share it with the council.
Meeting called to a close at 5:33pm.
Next Meeting May 24, 2016
Members Present: Brian, Jay, Linda, Angel, Ed, Shawn
Guest: Joan Scott, Julian Liang
February Minutes Adopted
A. CF Education Day Feedback: Follow up next meeting.
B. Patient Survey: Brian posted a rough draft of the Patient Survey on the ACFAC Only Facebook Page. He is still gathering feedback. Once rough draft is finalized Brian will post the Patient Survey to the Patient Only Facebook Page. Goal is to see how may responses we receive and what information we can gather from the survey. Patient confidentially is most important when we receive responses from patients.
C. Virtual Clinic Proposal / Online Collaboration: Brian received IT contact information from Joan. Brian will contact IT to find out more about the current pilot run of the online virtual clinic at Stanford and how we can participate.
D. CF Encounters: Follow up next meeting.
E. Informational Sheet: Follow up next meeting.
F. Issue Management Decision Tree Brochure: Outpatient Brochure is available at CF Clinic. Angel will post the Outpatient Brochure to the Patient Only Facebook Page to see if patients have grabbed their copy from clinic. Find out if the patients are finding the brochure as a useful piece of resources. Proof#01 of the Inpatient Brochure will be sent out before the next meeting. Goal is for the Inpatient Brochure to be apart of a Inpatient Packet.
G. Passport (Card used for CF Advocacy for other Clinic/ Er Visits): Angel picked up a Pediatric Passport at CF Ed Day. Angel will call the clinic phone to see what the message states regarding the phone number to contact for the Pulmonary Fellow On Call. This information will go on the back of the Passport. Linda will look into the idea of making the Passport Mobile Friendly. The Pediatrics Clinic has an English and Spanish Version. Angel will contact Meg to see if the Adult Clinic needs a Spanish version. Joan mentioned once we know the different langues she can help us translate the verbiage for the passports.
H.Coordination with CFF and External Clinic Development: Shawn will be sending the council an email on how CFF is putting everything in the works.
I. RPQ / MyHealth: Jay has not heard back from Christian regarding uploading the RPQ Form to MyHealth. He will follow up with Christian.
Jay showed everyone via Webex the new ribbon he has been working on. It looks awesome. He will work with Joan to figure out how to mail them out to the council members.
J. Clinic Patient Opportunities: Facebook Topic determine which medicines aren't available during a hospitalization and what the process should be for patients when using their own medications from home. Elika's response "The general rule is that if it's super expensive and difficult to get medication, bring it. Having said that some pancreatic enzymes which are not available don't fall into this category. For simplicity we can use this list of unavailable meds, with the caveat that it can change with time: Xopenex; Kalydeco, Orkambi, Pancreaze, Ultresa, Pertzye and Symbicort. Anything else that is not commonly used will need a case-by-case discussion."
Angel will post response to the Patient Only Facebook Page. In the future this will be part of the inpatient packet along with the inpatient brochure.
File Storage Recommendation: Joan is still working on it.
Joan will follow up with Mary on the status of the councils volunteer requirements. Remember all council members to login in your volunteer hours.
Action Items:
Devin: Feedback from the clinic CF ED Day Martch 8th CF Encounters Project.
Angel: Post Decision Tree Brochure to Patient Only Facebook Page to see if patients have grabbed their copy of the brochure.
All: If anyone notices a general question posted on the Facebook page and you feel needs more information, share it with the council.
Meeting called to a close at 5:33pm.
Next Meeting May 24, 2016
Monday, April 18, 2016
April Agenda
Stanford Adult Cystic Fibrosis Patient Advisory Council
Date/Time: Tuesday, April
26, 2016, 5:00pm-6:20pm
WebEx members should get set up 10 minutes
before the scheduled meeting time using the link provided in the green button
on the WebEx dialog below or the link at the bottom of the form. It is recommended you call in for audio as
opposed to using your computer.
Advisory Council visitors are welcome. Attendees must respect the Stanford CF Center
cross infection guidelines. Please do
not attend in person if you have an active viral infection or any other
contagious condition.
Please have
this copy of the agenda and attachments with you during the meeting.
Agenda
1. Introduction
(5:00 – 5:10)
2. Adopt February
minutes (5:10)
Please review
Angel’s minutes on the blog or via her email previously sent to you
3. Project
Update (5:10 – 5:50)
a. CF ED Day
Feedback – All
b. Patient
Survey – Brian
c. Virtual Clinic
Proposal/Online Collaboration – Erick/Brian
Action Items : Brian/Erick to contact IT for a status updates
Action Items : Brian/Erick to contact IT for a status updates
d. CF Encounters
– Devin
Action Items : Collect feedback from Jennifer & Julian and Joan with clinic input; Devin will work on a paragraph to go into the next Newsletter and provide to Zoe
Action Items : Collect feedback from Jennifer & Julian and Joan with clinic input; Devin will work on a paragraph to go into the next Newsletter and provide to Zoe
e. Informational Sheet on Masks – Devin
Action Items : Devin to check with the clinic on their recommendations for which mask(s) should be used
Action Items : Devin to check with the clinic on their recommendations for which mask(s) should be used
f. Issue
Management Decision Tree – Angel/Monica/Jay/Elika
Action Items : Angel will drop off brochures to the clinic Wednesday February 24th. Meg and Joan received the document via email. Angel will post on the Patient Only Facebook Page.
Action Items : Angel will drop off brochures to the clinic Wednesday February 24th. Meg and Joan received the document via email. Angel will post on the Patient Only Facebook Page.
g. Passport (card used for CF advocacy for other ER
visits) URLs – Angel/Linda : New project
h. Coordination
with CFF and external clinic development – Shawn
i. RPQ/MyHealth update – Jay
Action Items : Jay emailed the RPQ Form to Christian to be included with MyHealth for digital download/upload. Christian will contact us once they get further along.
Action Items : Jay emailed the RPQ Form to Christian to be included with MyHealth for digital download/upload. Christian will contact us once they get further along.
j. Clinic-Patient Opportunities –
Angel/Monica/Elika
Action Items : Angel to check with the clinic to determine which meds aren’t available during a hospitalization and what the process should be for patients when using their own medication from home.
Action Items : Angel to check with the clinic to determine which meds aren’t available during a hospitalization and what the process should be for patients when using their own medication from home.
4. Action Items
(5:50 – 6:00)
a. Joan – update on file storage recommendation
b. Jay – Jennifer will send Jay a picture of the
ribbon that is currently being used by staff members. Jay will collaborate with
Mary about adding our logo to the ribbon for our name badges
5. Reminders
a. Publicize council
and council activities
b. Continue to complete volunteer requirements
c. Future Projects
Hospital RPQ
Hospital RPQ
CF
Patient Medical Compendium
6. Final Comments/Discussion
(6:00 – 6:10)
Next meeting April 25, 2016
Next meeting April 25, 2016
7. Closed
Session (6:10 – 6:30)
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