ACFAC Minutes 12-17-2014
Members Present: Brian, Devin, Jay, Angel, Annette, Shawn, Victoria, Lauren
Members Absent: Ed, Colleen, Monica
Guest: Elika, Jennifer
Council Votes: October Minutes Approved
CF PAC Project Updates - Open Issues (Oral Antibiotics and Baseline Determination)
- Oral Antibiotics: Elika reported to the council that the CF team reviewed the list of issues and concerns presented by the council hovering over the topic, of calling in for oral antibiotics. The census from the CF team was every patient should be treated case by case. Meaning what's best for each CF patients unique needs. Our CF population is growing and with that comes changes in side effects to medicines, resistance, cdiff infections, liver issues, kidney issues, flu season, etc.. Setting a algorithm would be difficult and complex because each patient is so uniquely different. Can a patient use their previous sputum culture to call in for oral antibiotics to hold them over until thy can be seen in clinic? It depends on your unique case. Solution case by case.
- Baseline Determination: There are two ways you Fev1 scores get recorded. One is a Chart Flow Sheet that banks all your Fev1 scores over a course of three years. The data is entered manually and it provides the doctors an overview of your Fev1 scores. Secondly is a Note. The Note summarizes notes within a years time and looks at the highest scores within the year. The Note does take into account your research study participation pft scores, hospitalizations, discharges etc..
Virtual Meeting Proposal/Online Communication - Coordinate with CFF and External Clinic Development
- Shawn was contacted by Kathy from Dartmouth who created a survey to better improve patient healthcare. Kathy will send Shawn the survey to share with the council members. Once the council members approve the survey, Shawn will then pass it along to Meg who can distribute it to the CF community at Stanford. Other places participating in the survey are: Cincinnati, Chicago, California and Seattle.
MyHealth Project Update Status: No updates at this time.
Stanford Facebook Page Meeting Volunteer: Monica to report on at next meeting.
Actions Item Follow Ups From Previous Meetings:
- Colleen contacted both Dr. Milla and Dr. Mohabir regarding the new infection and control policy change. Stay 6 feet away from other CF patients and wear a mask. People with resistant organisms should not attend as well as those with cepacia, non tuberculous mycobacterium.
- Angel followed up with Jennifer to see if the MyHealth Team had been in contact regarding her email issues. Jennifer emailed Christian (MyHealth team member) back on 11/18/14. However she still has not received a response back. Jennifer also cc'd Joan Scott on the email to Christian and still no response. Jennifer asked if anyone from the council was in contact with the MyHealth Team that could pass along her phone number to get this issue resolved. Angel forwarded an email to Brian asking if he could help Jennifer contact someone from MyHeatlh to get her email issues resolved.
- The Newsletter article regarding new changes and policy was published and distributed by mail and is on the Stanford CF Clinics Website. The article printed was on CFer's needing a Primary Care Physician.
- Return Patient Questionnaire Form was sent out to all council members on 12/16/14 to review and provide feedback to Jay. Can this questionnaire form be available on the Facebook Page? Under current antibiotics can it list last oral antibiotics, iv antibiotics to make patients more responsible for their care? Can the word "normal" be changed to "a symptomatic" Elika made the suggestion to send out an email to other NP groups who use patient questionnaire forms and see what they find useful. This way we don't have to reinvent the wheel. No timeline has been set to finalize this questionnaire form. The Return Patient Questionnaire Form would help save time during a clinic visits.
- Parking cheats for unique cases was decided to be closed at this time.
- Angel received and email from Linda Velez from Stanford Volunteer Resources reminding council members to log in their volunteer hours. Angel will pass along the email to all the council today with links and instructions.
- Follow up with committee members on what extra steps they may have to complete to become a full Stanford Volunteer. Angel sent an email to Lorna Oyarce in November informing her she was working on gathering a list of all council members who have completed the volunteer orientation, and those who still needed too. Asking who to contact if the volunteer orientation still needed to be completed. Loran responded that recently she had been altered to the fact that when it shows some people are incomplete in their Healthstream (the online training modules) it could be showing it due for next August. Due to the Thanksgiving Holiday Angel's email might have gotten lost to Lorna. Angel emailed Linda Velez Stanford Volunteer Recourses and is awaiting a response.
- MyHealth Follow Up Interviews: No updates.
Action Items for Next Meeting:
- Elika: Write up an insert to be published in the next Newsletter regarding the topic of Baseline Determination.
- A council member: Post the Baseline Determination topic on the Facebook Page.
- All council members: Review the Return Patient Questionnaire form and send your suggestion to Jay.
- Jay: Email Elika the Return Patient Questionnaire form for suggestions.
- Elika: Email other NP groups who use a Patient Questionnaire from to see what they find useful.
- All council members: "Talk up the council" to other CFers in the waiting room at clinic. (Remember wear a mask and stay 6 feet away)
- Jennifer: Discuss with the New Clinic Manager to see if the ACFAC brochures can be placed at the front desk.
- All council members: Review the councils website and look for ways to improve it. Send your suggestions to Annette.
- Brian: If you are able to get into contact with the MyHealth Team pass along the email issues Jennifer is having. Also check to see if there is a way Jennifer can use MyHealth to send patients forms like a patients assistance program.
- Lauren: Join the Facebook Page, and advertise the council on Facebook Page .
Meeting called to a close at 6:30pm
Next Council Meeting: January 21,2015