Wednesday, October 22, 2014

"10-15-2014" Minutes

ACFAC Meeting Minutes 10-15-2014

Members Present:

  • Brian

  • Ed

  • Jay

  • Victoria

  • Annette

  • Colleen

Members Absent:

  • Monica

  • Shawn

  • Angel

Guests Present:

  • Karen 

Tasks Assigned:

  • Devin will be an "ambassador" type on the Stanford patient page to check in occasionally to see what sort of constructive criticisms people have for the clinic. The council may be able to work on and bring these concerns to the clinic team.

  • Pending Future Project: Joan and Brian E to contact Christine from MyHealth to see about a possible collaboration between Epic Synopsis and MyHealth

    • Brian will talk to them a week after his trip to Israel.

Project Updates:

  • Council Time Commitment Concerns

    • We will keep the same commitment requirements as they stand currently: monthly meetings and each member is allowed to miss 4 meetings each year.

  • Improving our Visibility and Increasing Membership Status:

    • Cathy Hernandez will be posting the agenda to the CF Patient Facebook Page, Stanford webpage, and Stanford CF Center Facebook page.

    • Meg and Jennifer are super busy because we lost Susan last week and will lose Camille at the end of October. We will ask for their help after the clinic has more support.

    • Everyone should post on their personal FB pages to raise awareness of our council.

    • The e-mail blast that goes out has a clearer name: CF Adult Advisory Council

    • Colleen put information and application forms about the council in the waiting room at clinic

      • There is a clear holder with application sheets and magnets at the cabinet with the business cards.

      • No one saw it.

      • Cannot put it in rooms, can't put it at the registration desk, we don't want to bug the people at the registration desk too much, so maybe we'll try putting information on myhealth when that is available.

    • Council members that know anyone with CF that wants to join direct them to Colleen

    • Jay and everyone else will look at the Council website and think of ways to revamp it

      • Maybe a History Page to note past leaders like Lori and Kriss

      • An achievements section to show what we've been able to accomplish

      • Monica will help improve the quality of Facebook pages for different groups and increase advertising for ACFAC and the webpage

  • CF PAC

    • Clinic-Patient Opportunities – Monica/Angel/Elika were Absent, will talk about the following next time:

      • List Definition – Status

      • Oral Antibiotics

      • Baseline determination

    • Virtual Meeting Proposal/Online Collaboration

      • CFF – Coordination with CFF and external clinic development – Brian E., Shawn

        • someone from dartmouth is in contact with Brian. Brian didn't have time, so Shawn volunteered. Brian will stay involved to help with overall vision.

      • MyHealth project status – updates per participants

        • Victoria talked to the MyHealth team.

          • The website looked better. They will have ability to upload questionnaires in future. Looks like they took people's suggestions to heart.

          • they wanted to know if it was easy to navigate, how it was compared to what you expected. MyHealth has added graphs, but Victoria wants to be able to see if you can do graphs with two data sets in the graph to improve the ability of patients to compare scores.

      • Facebook meeting volunteers – Monica was absent, so we will discuss this next time.

  • Patient Questionnaire Form

    • Jay talked to Elika:

      • she suggested going from free-form format to one with choices (tempurature, fever, etc.)

      • break down "diagnoses" question to two parts. One about symptoms, and then another one about diagnoses that you can save and add to.

    • another question will concern changes from the patient's previous clinic visit.

Action Items:

Colleen: Contact Dr. Milla and Dr. Mohabir regarding the policy change Re: more than one CFer attending the meeting in person.

Brian: Continue to follow up with Joan (who had not responded) about "parking cheats" for "unique cases," focusing on patients who are on oxygen and need valet parking.

Brian: Follow up with committee members what extra steps they may have to complete to become full Stanford Volunteers. Also find out what acronyms like "CRIM" (sp?) mean.

Brian: After trip to Israel, follow up with MyHealth group concerning

Angel & Monica: Follow up with Elika regarding the policy regarding calling the clinic for antibiotics and, when appropriate, baseline determination.

Angel: Follow up with Jennifer regarding MyHealth email issues.

Jay: Send committee an updated version of the Patient Questionnaire form after updating it with suggestions from Elika.

Jay & everyone else: Review CF Advisory website (located here: ) to see how the website may be improved. Send suggestions to Jay.

Jay: draft an accomplishments and history section for the website.

Shawn: Follow up with CF center at Dartmouth and CFF about external clinic development. Keep Brian (and council) informed of progress.

Devin: Monitor Stanford patient FB group and note issues that people bring up that the council may be able to address.

Next meeting 11-19-2014

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