"2-20-2014 Minutes"

ACFAC 2-20-2014 Meeting Minutes

Members Present: Brian E, Angel, Ann, Ed, Colleen, Brian T, Elyse, Jay, Victoria

Guests Present: Karon

Council Votes: January minutes voted on and adopted.

Tasks Assigned: None

Project Updates:  

Brain E is still working with Joan on the best practices other councils have in regards to blogs, and interaction with Stanford and other organizations. An ongoing project the council revisited is working on a vision concept. Almost all CF patients are linked onto MyHealth through the clinic. Brian E gave a presentation summarizing key topics CF patients might be interested in seeing on MyHealth. A CF patient might want to track their Fev1 and weight over a period of time. What other topics would patients like to see on MyHealth? Currently MyHealth is looking for feedback. 

Brain E spoke with Colleen about continuing as a member chair and confirmed that she is still interested in remaining as a voting member. 

Discussion held on possibly changing the council's meeting time and day. Council agreed for the time being to keep the meeting day on Wednesday since it is a clinic day, therefore staff would be more available to attend meetings. The length of the meetings was changed to one hour. 

 Posting out announcements to a large community? The agenda for the council's meetings are blasted out onto the Stanford CF Clinic webpage every month. Should the agenda be posted on the councils Facebook page? It will allow followers to be bettered informed with our meetings, and welcome new members joining in on the discussion. Karen will check with Tom (IT) to see if there is a limit to how many people can join the meeting via webex. 

The council discussed adding different content to the agendas. Topics included quarterly reports on upcoming research studies and trails. Due to confidentiality guidelines it was recommend to check out the Stanford Cystic Fibrosis Center Newsletter, and visit Clinicaltrails.gov and CFF.Org. The newsletter and websites provides a list of all new studies and trails. Having a staff member from clinic attend quarterly meetings to give the council a five minute update on how the clinic is doing.  Colleen to speak with Jocelyn and new nurse practitioner to see if either can commit to attending meetings. How to obtain feedback from inpatients if there are concerns or issues? The council assigned Ed as the Ambassador/ Patient Liaison to gather feedback from inpatients and share the findings with the council on patients concerns or ideas to better improve inpatient care. 

Other: None. 

Action Items (as read by secretary): Karen to contact Tom (IT) to see if there is a limit to how many people can join our meeting via webex. Colleen: Contact Jocelyn and the new nurse practitioner to find out if there can be a commitment to attend quarterly meetings. Angel: Contact Laura to see if the CFRD cards where printed and if they are now available to patients in clinic. Brian E: Contact Joan regarding updates the council needs for their volunteer status. Angel: Contact the Living Breath Foundation to see about a possible donation to the clinic to help patients with travel, gas, and hotel expenses. Jay: Check the material on the website to make sure the travel routes are up to date.  Brain E: Contact Brain T to find out his presence on maintaining the Facebook page. Colleen: Contact Richard to see if he can attend CF Ed day. All council members to check the councils Facebook page to see if recurring issues or concerns are being brought up that the council can take a closer look at. Email topics to Angel or Brian E a week before the next council meeting so topics can be added to the agenda. 

Meeting called to a close at 6:30pm. 

Next Meeting: March 19, 2014

*Note: Do not include content of any information regarding any closed sessions.  Only denote a closed session held.