ACFAC Meeting Minutes – May 15th, 2013
Members Present: Colleen, Jackie, Laura, Ann, Elyse, Jay, Brian E., Ed, Richard
Guests Present: Kathy, Eric, Sarnjit, Meg
Members Absent: Lauren, Brian T.
- April 2013 minutes approved.
- Jackie is expecting (due in October) and requested a council member or members to help with temporarily filling in at Secretary role to take minutes, possibly starting August but definitely starting September. Colleen volunteered to take minutes for August meeting.
- Discussion regarding the council's new project in partnering with the clinic, supporting newly diagnosed CFRD (Cystic Fibrosis Related Diabetes) patients. Members who had areas to research presented his/her findings on that specific area.
- Kathy provided some background and discussed what is currently provided to newly diagnosed CFRD patients. This includes: a booklet designed by the CF Foundation regarding CFRD, approximately 45 pages long; a glucometer and handbook; and the possibly of using mobile applications (apps) to help with management of CFRD.
- Ed and Kathy researched the area of apps for mobile use. Kathy had several that have already been "vetted." The next goal is to organize the apps into categories and possibly create a bookmark type handout that can be provided to patients. Ed requests that any member who is using an app, to let him know to add it to the list.
- The next area discussed was the possibility of a separate CFRD support group. Elyse investigated this possibility with Meg and the consensus was that a separate group would not be feasible. Instead, Meg's goal is to have at least one adult support group meeting per year devoted to CFRD. Meg also mentioned that the CFRD tends to come up during support group meetings, regardless of the topic. It was also noted that this avenue does not really address the newly diagnosed, and while ongoing support for CFRD is needed, the current goal is outreach to those who have been newly diagnosed.
- Laura investigated the possibility of a mentor or buddy system. Given the training required and liability involved, it was also agreed that this may not be the best avenue to start out.
- The last area discussed was the use of social media. Brian researched different types of social media and had a presentation that will be emailed to council members after the meeting. He looked at the different types of resources and highlighted the different tasks of the websites. Some sites are more informational in nature, and others are designed for more interaction. The goal of his presentation was to help the council identify what the council wanted from the social media for this project.
- Meg identified that many CF patients she works with find social media, specifically Facebook, as an integral resource for discussing topics and even "venting." It is seen as a method of support that is essentially available at all times. Meg has talked with Stanford's Facebook liaison regarding having a private Facebook group for CFRD support. The group would be private, via invitation only, and per the liaison, would be separate from a person's own page. For example, information posted by a person to the private group page would not appear on his or her own timeline. It was discussed that should the council decide to proceed, that the council members should all participate to help get the page going.
- All: Let Ed know if you are using any apps related to CFRD
- Laura: To work with Ed to develop a bookmark style handout for the completed list of apps
- All: Review Brian E.'s presentation regarding the difference in websites
- Richard and Colleen: To brainstorm a catchy title and description for the private CFRD Facebook group/page