03-19-2014 Minutes

ACFAC Minutes - March 2014

Members Present: Elyse, Victoria, Monica (new member), Jay, Anne, Colleen, Richard, Brian

Members Absent:

Guests Present: Joan Forte-Scott, Zoe Davies

Council Votes: February Minutes Approved

Tasks Assigned:

1. Monica – Facebook review, develop a project proposal and plan. Elika is a likely contact to work with, please contact her.
2. Joan – conversation with clinic staff and getting their involvement
3. Joan – provide update (when appropriate) for cross-domain advisory council, Elyse expressed interest in participating
4. Joan – follow-up on alignment between volunteer guidelines and current ACFAC membership. Includes a follow-up for Jay's issue on information he submitted earlier.
5. Joan– meet with Ann and Meg concerning the strategy for Ann's desire to help with fund-raising for the CF community.
6. Brian E. – draw up rough description of potential concept for virtual clinic visits, send to Joan

Project Updates: 

MyHealth mockup has been shared with CF Pediatric AC and Pediatric Nursing Staff for additional comments. Opportunity to work with the MyHealth team is a chance to drive valuable change with regards to access to healthcare information within the CF community.

       Preliminary list for MyHealth interviews: Richard, Victoria, Monica, Jay, Kriss B., Brian E.

Other: Joan Forte-Scott presented an overview presentation on Patient and Family Partner Programs, a further evolution of the process of moving from a caregiver centric definition of healthcare to a patient centric one. The current ACFAC, soon to be a longer acronym incorporating an "F" for Family somewhere, was formed with this goal in mind, and going forward Joan and her team will be a valuable partner for us. This appears to be an ideal time to have a much greater impact on the quality of care for CF patients and family than ever before.

Colleen provided an update on Research. Currently only one study is recruiting, which is a good sign that studies are filling up rapidly.

Action Items (as read by vice-chair):

March 2014 Agenda

Stanford Adult Cystic Fibrosis Advisory Council (ACFAC) Agenda

Date/Time: Wednesday, March 19, 5:00pm-6:30pm
Location: Blake Wilbur Conference Room & WebEx

WebEx members should get set up 10 minutes before the scheduled meeting time using the link provided in the green button on the WebEx dialog below or the link at the bottom of the form.

Advisory Council visitors are welcome.  Attendees must respect the Stanford CF Center cross infection guidelines, which at this time allow only one individual with CF in the meeting room. Please do not attend in person if you have an active viral infection or any other contagious condition.

Please have this copy of the agenda and attachments with you during the meeting.

Agenda

1.  Introduction (5:00 – 5:10)

2.  New Member Introduction (5:10 – 5:14)

3.  Adopt November minutes (5:14 – 5:15)

a.    Please review Angel’s minutes on the blog or via her link previously sent to you

4.    Clinical Research Update – Colleen (5:15 – 5:30)

5.    Stanford Patient and Community Engagement (5:30 – 6:00)
Joan Scott, Administrative Director

a.    Overview

b.    MyHealth Coordination Project

6.    Action Items from Previous Meeting (6:00 – 6:15)

a.    Brian E: check on limit to how many people can join our meeting via WebEx

b.    Colleen: Contact Jocelyn and the new nurse practitioner to find out if there can be a commitment to attend quarterly meetings

c.     Angel: Contact Laura to see if the CFRD cards where printed and if they are now available to patients in clinic

d.    Brian E: Contact Joan regarding updates the council needs for their volunteer status

e.    Angel: Contact the Living Breath Foundation to see about a possible donation to the clinic to help patients with travel, gas, and hotel expenses.

f.      Jay: Check the material on the website to make sure the travel routes are up to date.

g.    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.

7.    ACFAC Project Update – (6:15 – 6:20)

8.    Proposals for New Projects (6:20 – 6:30)

9.    Action Item Review (6:30 – 6:35)

Adjournment - Next meeting 4/16/14

WebEx One Touch System (Video):

Administrator Administrator invites you to this meeting. March 19th CF WebEx One Touch 3/19/2014 11:36 AM Wed, Mar 19, 4:45 PM | 2 hr 15 min (UTC-08:00) Pacific Time (US & Canada) This is a connection for CF WebEx Telepresence. If WebEx attendees could join 15minutes early at 4:45 PM PST it would be very helpful. WebEx attendees will need to click the green "Join Using WebEx' tab within this invite and join the audio bridge by phone. Telepresence attendees will need to press the green "Join" button on the tabletop touch screen. Also, enable the camera by clicking the camera icon next to your name in the WebEx participants list. Questions call Tom Metz 650 492 3675 Join Using WebEx Meeting password: 1234 Meeting number: 344430078 Join Using Telepresence Video address: 7527500@stanfordmed.org Locations: TP-900 Blake Wilbur-Conf RM W1084 Audio Connection Call-in numbers Toll: +1-415-655-0000 Toll-free: 1-877-668-4488 Access code: 344430078 Global call-in numbers Toll-free calling restrictions

If you need the host key or cannot join the meeting using WebEx from this email message, go here: https://stanfordmedot2eft.webex.com/stanfordmedot2eft/j.php?MTID=m636f5e558c8a7a7e53fcb4b2c9a568f2 Need more details about joining the meeting using telepresence? https://10.243.78.17/tms/default.aspx?pageId=79&ConfId=9904&View=true Having trouble joining from a telepresence room? Get help.

"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.

February 19, 2014

WebEx members should get set up 10 minutes before the scheduled meeting time using the link provided in the green button on the Webex dialog below.  There is also a link at the bottom of the form that can be copied and pasted into a browser window if the link does not work correctly for you.

Advisory Council visitors are always welcome.  Attendees must respect the CF Center at Stanford cross infection guidelines, which at this time allow only one individual with CF in the meeting room. Please do not attend in person if you have an active viral infection or any other contagious condition.

Please have this copy of the agenda and attachments with you during the meeting.

Stanford Adult Cystic Fibrosis Advisory Council (ACFAC) Agenda

Date/Time: Wednesday, February 19, 5:00pm-6:30pm 

Location: Blake Wilbur Conference Room & Webex

Open Session

1.    Action Items from Previous Meeting (5:00 – 5:15)

a.    Brian E: Contact Joan about what are the best practices other councils have in regards to blogs and interaction with Stanford organizations.

b.    Brian E: Talk to Colleen about continuing as member chair and confirm interest in remaining a voting member.

c.     Richard: Contact Colleen about CF Education Day in March; possibly get a staff member present for March's meeting.

d.    Richard: Contact Brian T to find out his presence on maintaining the Facebook page.

e.    All council members to be prepared to discuss alternative meeting times and days.

2.    Logistics (5:15 – 5:45)

a.    Meeting Time – Proposed new time?

b.    Meeting Length
c.  Open/Closed Sessions

d.     Posting Meeting Announcement Info to At-Large Community

e.    Periodic CF Related Updates – Value add for meetings?

                                                    i.     Stanford Research

                                                  ii.     Additional Suggestions

3.    Projects (5:45 - 6:00)

a.    ACFAC / CF Center partnership

b.    Previous projects – are updates required

4.    Proposals for New Projects (6:00 - 6:10)

Closed Session

1.  Bylaw Change Proposals (6:10 – 6:20)

2.  Adopt November minutes (6:25 – 6:27)

a.   Please review Jackie's minutes on the blog or via her link previously sent to you.

3.    Action Items (6:27 – 6:30) (Richard)

4.    Adjournment - Next meeting TBD

Webex One Touch System (Video):

Webex Administrator invites you to this meeting. CF Group Meeting 2/19/2014 4:30PM-7PM Wed, Feb 19, 4:30 PM | 2 hr 30 min (UTC-08:00) Pacific Time (US & Canada) CF Group Meeting WebEx attendees will need to click the green "Join Using WebEx' tab within this invite and join the audio bridge by phone. Also, enable the camera by clicking the camera icon next to your name in the WebEx participants list. It is recommended that you mute your audio unless you are speaking. Questions call Tom Metz 650 492 3675 Join Using WebEx Meeting password: 1234 Meeting number: 343917972 Join Using Telepresence Video address: 7527500@stanfordmed.org Locations: TP-900 Blake Wilbur-Conf RM W1084 Audio Connection Call-in numbers Toll: +1-415-655-0000 Toll-free: 1-877-668-4488 Access code: 343917972 Global call-in numbers Toll-free calling restrictions

If you need the host key or cannot join the meeting using WebEx from this email message, select the link below:

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