ACFAC Meeting Minutes – April 17th, 2013
Members Present: Ed, Ann, Laura, Elyse, Brian E., Brian T., Richard, Jay, Colleen
Guests Present: Kathy, Karrie, Karen, Sanjeet, Renetta
Members Absent: Jackie, Lauren
- March 2013 minutes approved.
- Introductions: Renetta introduced Sanjeet, the new pulmonary assistant clinical manager. Also introduced was Karen, who is the new heart/lung transplant manager and is covering for Eric.
- Kathy discussed the progress on the last project, the infection control Question/Answer handout. After the council reviewed and made suggestions electronically, the final product was sent back to Kathy and she presented it to the Infection Control designee for review. The product was approved and the clinic has begun to distribute it to patients who are being admitted. The goal is to continue to review the guidelines not only with the nursing staff, the other ancillary staff as well. Continued review and feedback is being sought and updates to be provided after several months. Of note, Jay did try to join the webcast held by the CFF after the new recommendations were released, but it was only open to the first 2,000 to sign up.
- Discussion regarding the council's new project in partnering with the clinic, supporting newly diagnosed CFRD (Cystic Fibrosis Related Diabetes) patients. The goal is to provide psychosocial support and "tips" (vs. medical advice) to those who are coping with the new diagnosis of CFRD. The age group of the newly diagnosed CFRD patients tends to be between the ages 18-34. Currently, the clinic provides a book and other various written resources, as well as referring the patient to endocrinology and diabetes educator services. Several aspects for expansion of support were discussed including, means of support (telephone/email/online), set-up of program (formal mentoring vs. informal "resource" list), and distribution of materials (written vs verbal). The discussion brought out several key ideas for further research as follows:
- The council discussed that while 1:1 support would be helpful, this project does not seem to be as formal as the Peer2Peer program. In fact, it may just be a one-time conversation on topics within CFRD such as insulin pump information or carb counting. Another idea brought up was having a resource list of patients who have agreed to be contacted in the event the clinic has a patient with specific questions. Several council members indicated that training would be required as patients may have more medically-based questions that would not be appropriate for the resource contacts to address.
- In terms of online avenues, the council plans to further research the capabilities of using the website as a method information dissemination and/or online messaging, support, chat, etc.
- Another idea was a support group. The CF support group in May was devoted to CFRD, and depending on its success, the council would like to bring up the possibility of having a separate support group for CFRD. After discussion, the various areas were split up for members to research. Please see action items for details
- Ann provided an update regarding the fundraising efforts for the transportation project. To date, there have been 25 donors with a total of $4,765. Ann still has several people who have plan to donate and feels that the council will reach the $5,000 goal. The council will continue to follow up with Meg to see how long the funds last and will discuss in later meetings whether this will be a yearly goal. Laura is interested to see some statistics in several months to see the impact of the funds raised on clinic attendance.
- Brian E. attended a meeting that included other Stanford patient advisory council representatives with the focus of address the functionality of the Stanford hospital website and ways to make the website more user friendly.
- Jay and Elyse briefly discussed the Peer2Peer program. Some barriers have been presented, but Meg and Amy (the social worker contact for the program) have been contacted and are aware.
- Next meeting set for May 15th from 5 – 7pm. We will continue to have one CF patient at a time in the room. Laura to coordinate the next person to attend.
- Laura / Elyse - Extend invitation to Meg to the next meeting to provide some insight on the ideas discussed regarding supporting newly diagnosed CFRD patients.
- Laura / Elyse – Coordinate with Kathy to bring to Meg the idea of a CFRD support group
- Laura – Coordinate with Kathy and Meg ideas for providing training to the potential "resource" contacts
- Laura – Coordinate with Kathy to get a copy or idea of the information that is already provided to patients diagnosed with CFRD
- Ed - Coordinate with Kathy to compile a list of applications for Apple/Android that may help in the management of CFRD.
- Brian E. – Investigate the possibility of online support / capabilities for website functionality