August 2014 Agenda

Stanford Adult Cystic Fibrosis Patient Advisory Council

Date/Time: Wednesday, August 20, 5:00pm-6:00pm
Location: Blake Wilbur  Room W1084 & 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.  It is recommended you call in for audio as opposed to using your computer.

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)

a.   Welcome Annette!

2.  Adopt July minutes

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

3.    CF PAC Project Update – (5:15 – 5:40)

a.    Clinic-Patient Opportunities – Monica/Angel/Elika

                                                    i.     Status Update

                                                  ii.     Ongoing Tracking

b.    Outreach to other advisory boards

                                                    i.     Angel/Ann report out

                                                  ii.     NACFC contact – Brian

                                                iii.     Patient Family Partner Board report out – Brian

c.     MyHealth interviews – no update

d.    Virtual Meeting Proposal – no update

4.    Action Items from Previous Meeting (5:40 – 5:50)

a.    Colleen – provide Joan a list of receipts for the volunteer orientation process.

b.    Elika – email Angel the outreach list for other councils.

c.     Joan to investigate "parking cheats" for "unique cases."

d.    All Members:  Open suggestions "in what ways can CFRI improve and increase resources / outreach programs in the community." Currently CFRI provides The Discovery Series, Community Newsletter, Educational DVD's and the Annual Educations Conference. Think of other ways to reach out?

5.    Proposals for New Projects (5:50 – 6:00)

a.    Clinic form (MyHealth) – Volunteers?

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

Adjournment - Next meeting 9/17/14

Administrator Administrator invites you to this meeting. CF webex one touch 8/20/14 5-6PM Wed, Aug 20, 5:00 PM | 1 hr (UTC-08:00) Pacific Time (US & Canada) This invite is for the CF webex one touch Meeting Telepresence attendees please press the join button on your touch screen to connect. • WebEx attendees please click the green "Join Using WebEx' tab within this invite. • Next join the WebEx audio bridge by phone. Do not use computer audio. • WebEx attendees to enable your laptop camera click the camera icon next to your name in the meeting participants list. Questions call: Tom Metz Unified Communications 650 492 3675 Join Using WebEx Meeting password: 2013 Meeting number: 342913208 Join Using Telepresence Video address: 7527502@stanfordmed.org Locations: TP-900 Blake Wilbur-Tumor Board W1084 Audio Connection Call-in numbers Toll: +1-415-655-0000 Toll-free: 1-877-668-4488 Access code: 342913208 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=mf38466f08fd0dd79216945add71572cd Need more details about joining the meeting using telepresence? https://10.243.78.17/tms/default.aspx?pageId=79&ConfId=16496&View=true Having trouble joining from a telepresence room? Get help. IMPORTANT NOTICE: This WebEx service includes a feature that allows audio and any documents and other materials exchanged or viewed during the session to be recorded. By joining this session, you automatically consent to such recordings. If you do not consent to the recording, discuss your concerns with the meeting host prior to the start of the recording or do not join the session. Please note that any such recordings may be subject to discovery in the event of litigation.

" 07-16-2014 Minutes"

ACFAC Minutes 07-16-2014

Members Present: Jay, Victoria, Mallory, Colleen, Ed, Angel, Brian E, Ed, 

Members Absent: Devin, Monica

Guest Present: Karen, Joan, Elika, Jennifer, Lorna 

Council Votes: June's Minutes Approved

Project Updates: 

Joans Action Items Updates

• Joan will continue to update the council on staff involvement. 

• Joan provided the council with an update regarding cross-domain. The cross-domain advisory has grown establishing a key concept between families, patients and MyHealth.  The Patient Family Partner Program Board (PFPPB) kicks off on July 31st. All of the councils will gather to discuss best practices, formalization of bylaws, applications, and communication sharing. There is a need for a virtual way to work on projects and not have it solely relay on email tags. An idea to get rid of the email tag is to adopt the concept of box cloud base system. If a council is having a topic in need of help they could enter there problem in the cloud based system to get more feedback from other councils. As of right now the only access to the cloud based system would be employees. In the future volunteers could have access to this tool. This idea is about 6 months out from presentation to all groups in collaboration with clinics. 

• Follow-up on alignment between volunteer guidelines and current ACFAC membership. On August 19th in the Bing Dinning Room there will be an orientation process for patients, and family members to get "grandfathered" in as a volunteers. 

• Clinic Patient Opportunities: The key goal is to improve communication, identify conman goals and have a partnership with staff and council. 

Elika shared the Cystic Fibrosis Newsletter is an outreach tool the staff uses to update the patients on any changes going on in the clinic. Colleen reported the Cystic Fibrosis Newsletter is mailed out to every CFer who is registered through the clinics. The newsletter is also available in both the Adult and Pediatric clinics, and the pdf version is available on the Stanford website about a week or two after if has been published. Elika mentioned the staff having more of a physical attendance to the advisory council meetings. Possibly having a staff member attend the meetings on a every other month basis. This will help the council and staff support each other and have a partnership to solve and conquer projects. Elika also stated if we as council members are noticing there is ongoing issues, problems, or concerns about the clinic arising on the Facebook page, to direct the people to contact the Clinical Director Dr. Paul Mohabir. This will help the team become aware of any issues, problems, or concerns, so they can find a way to resolve it. If someone is not comfortable enough working directly with the team encourage them to send an email to Angel or Monica and we can relay the information to Elika. Again the goal is to improve communication, identify conman goals and have a partnership with staff and council. 

  

An ongoing project Elika has been following up on the Epic Synopsis. Epic Synopsis is like a follow up sheet, it pulls data from results on everything we as patients have done. She is still waiting on reviews. This could open the door for a possible collaboration between Epic and MyHealth working together. 

Embroy Feedback: Ashley called in from Georgia during last months meeting. She is currently involved in trying to start a CF advisory council for Emory hospital.  She was very impressed with our council, stating she liked how the council took responsibility for the tasks assigned to them, and how we conquered tasks. We will see if we can get a follow up with Ashley in the next month or two. 

MyHealth Second Interview Feedback: Brain E asked the question"when do we know were done solving a problem?"  He provided a presentation titled " Prepare for CF Clinic" you can view the presentation on the Facebook Page. The CF Visit Storyboard concept is before your next clinic visit to go through the storyboard and click on the needs, goals, issues, and problem for your "unique case" to help improve your upcoming clinic visit. This will help make sure questions get answered, and action items get resolved before the end of your clinic visit. This concept goes along with the idea of the virtual clinic visit.

Jennifer asked the council if there a way the MyHealth team could help filter email messages that get emailed to her? As of right now when you send a email to Jennifer it goes into a pulmonary que and she has to filter through hundreds of emails to find the ones specifically for the CF clinic. Joan and Brain suggested contacting Christine  (a member of the MyHealth team) to see if he could meet with clinic staff to get this issue resolved and possibly gather feedback for their expectations for MyHealth. 

Colleen reported to the council that yes the council can put a question and answer section into the newsletter. 

Tasks Assigned:

Colleen send Joan a list of receipts for the volunteer orientation process. 

Elika email Angel the outreach list for other councils. 

Elika, Monica, and Angel work together to provide a set list of potential opportunities for improving clinic experience.  

Angel: Contact and investigate other advisory boards to see what other councils are doing, how they function and do all hospitals have an advisory board? 

Joan to investigate "parking cheats" for "unique cases."

All Members:  Open suggestions "in what ways can CFRI improve and increase resources / outreach programs in the community." Currently CFRI provides The Discovery Series, Community Newsletter, Educational DVD's and the Annual Educations Conference. Think of other ways to reach out? 

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

Meeting called to a close at 6:55 pm

Next Meeting August 20, 2014

July 2014 Agenda

Stanford Adult Cystic Fibrosis Patient Advisory Council (CF PAC) Agenda

Date/Time: Wednesday, July 16, 5:00pm-6:00pm
Location: Hoover Pavilion 5th Floor Conference Room& WebEx

Please Note Change in Conference Room

Directions to Hoover Pavilion

From Bayshore US Highway 101 North or South

1.     Take the Embarcadero Road/West exit.

2.     Follow Embarcadero Road for about two miles.

3.     Turn right on El Camino Real and left on Quarry Road.

4.     The Hoover Pavilion is located at 211 Quarry Road and will be on your left.

From Highway 280 North or South

1.     Take the Sand Hill Road exit and head east.

2.     Turn right on Arboretum Road and left on Quarry Road.

3.     The Hoover Pavilion is located at 211 Quarry Road and will be on your right.

El Camino Real North or South

1.     Turn on Quarry Road.

2.     The Hoover Pavilion is located at 211 Quarry Road and will be on your left

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.  It is recommended you call in for audio as opposed to using your computer.

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)

a.   Welcome Mallory!

2.  Adopt June minutes

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

3.    CF PAC Project Update – (5:15 – 5:40)

a.    Joan – Action Item Update

b.    Clinic-Patient Opportunities – Monica/Elika

                                                    i.     Status Update

                                                  ii.     Ongoing Tracking

c.     Outreach to other advisory boards

                                                    i.     Angel/Ann report out

                                                  ii.     Emory feedback

                                                iii.     Cincinnati

d.    MyHealth interviews – Jay, Monica, Victoria, Richard, Brian

                                                    i.     Summary, overall impressions

                                                  ii.     Storyboard – Follow-up interviews, questionnaires

e.    Virtual Meeting Proposal

                                                    i.     Alignment w/ Cincinnati Effort/CFF

4.    Action Items from Previous Meeting (5:40 – 5:55)

a.    Colleen: contact the editor of the newsletter regarding a questions and answer section. The council comes up with a general question and staff can answer and have it published in the newsletter.

b.    Devin: Write a post on the Facebook pages asking for "parking cheats" that anyone knows about. Collect the data, and contact Guest Services, and the CF Clinic to see if these "parking cheats" are legit.

c.     All Members:  Open suggestions "in what ways can CFRI improve and increase resources / outreach programs in the community." Currently CFRI provides The Discovery Series, Community Newsletter, Educational DVD's and the Annual Educations Conference. Think of other ways to reach out?

d.    Covered in agenda

                                                    i.     Participants capture MyHealth interview impressions

                                                  ii.     Brian E: meeting with Joan

                                                iii.     Ann / Angel: Contact and investigate other advisory boards to investigate opportunities for collaboration

5.    Proposals for New Projects (5:55 – 6:10)

a.    Clinic form (MyHealth) – Volunteers?

Adjournment - Next meeting 8/20/14

Administrator Administrator invites you to this meeting. CF PAC Meeting July 16th 5-7p Wed, Jul 16, 5:00 PM | 2 hr (UTC-08:00) Pacific Time (US & Canada) This invite is for the CF PAC Meeting Telepresence attendees please press the green "Join" button on the tabletop touch screen. (note: if you need to switch or add TP rooms for this meeting contact UC team) • WebEx attendees would be best to have a hardwired network cable on their machine then click the green "Join Using WebEx' tab within this invite. • Next join the WebEx audio bridge by phone. Do not use computer audio. • WebEx attendees to enable your laptop camera click the camera icon next to your name in the meeting participants list. Questions call: Tom Metz Unified Communications 650 492 3675 Join Using WebEx Meeting password: 2014 Meeting number: 343495700 Join Using Telepresence Video address: 7527501@stanfordmed.org Locations: TP-Hoover-Conf RM 508-DP55 Audio Connection Call-in numbers Toll: +1-415-655-0000 Toll-free: 1-877-668-4488 Access code: 343495700 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=m3074b0e890afee088c6dc948940237bd Need more details about joining the meeting using telepresence? https://10.243.78.17/tms/default.aspx?pageId=79&ConfId=14253&View=true Having trouble joining from a telepresence room? Get help. IMPORTANT NOTICE: This WebEx service includes a feature that allows audio and any documents and other materials exchanged or viewed during the session to be recorded. By joining this session, you automatically consent to such recordings. If you do not consent to the recording, discuss your concerns with the meeting host prior to the start of the recording or do not join the session. Please note that any such recordings may be subject to discovery in the event of litigation.

"06-18-2014 Minutes"

ACFAC Minutes 06-18-2014

Members Present: Jay, Victoria, Monica, Brian E, Richard, Devin, Angel, Ann,

  

Members Absent: Colleen, Mallory, Ed, Brian T, 

Guest Present: Karen, Ashley - called in from Georgia; she is currently involved in trying to start a CF advisory council for Emory hospital.  She wanted to see the kind of things we do so she listened in on our meeting.

Council Votes: April's Minutes Approved

Project Updates:

MyHealth Interview

Jay- Had his round two interviews with the MyHealth team. He offered the team suggestions on creating a new interface, having FVC, FEV1, and Genotype options to view. Possibly adding a feature for external sources to be included. For example syncing the Fitbit with MyHealth. Making MyHeatlh more modern and user friendly. Adding the Return Patient Questioner form to MyHealth so the CF Team would be able to view information before your clinic visit. 

Monica- Suggested a timeline or a tracker feature to compare changes in your health. For example tracking your weight vs. FEV1. Also adding a Advanced Directive feature. This would allow the person on the Advanced Directive to be able to access all or limited information (depending on the limitations you set up through your MyHealth account) if you became unable to speak for yourself.

 

Brian E- Is scheduled to have his second interview next week. 

Victoria- Suggested creating customized or "favorites" browsers.  This feature would allow you to customize what you want to view on your MyHealth account. For example tests, procedures, weight, ect.  Improve charting abilities, and being able to compare FEV1 to weight. Attach links on certain tests or conditions. The Palo Alto Medical Foundation's MyHealth grants access to a persons you appoint to view your information after signing a HIPPA form. This could be also the person on your Advanced Directive such as a spouse, friend, or family member.

 

Richard- Had the same input and experience as everyone else. Nothing more to add. 

* Overall the MyHealth interviews went great and those that participated really felt that their inputs and suggestions where being valued and heard* 

Clinic - Patient Issues: Monica reported the hot topics on the Facebook page. CFer's are still confused on why they need a primary care physician, and the issue of calling the clinic to get a medicine prescribed to you over the phone as opposed to coming into clinic. We suggested to Monica to reach out to Elika and see if we can get a commitment from Elika to join the council meeting every 1st quarter to summarize issues and continue the open communication between staff and patients.  Karen made contact during the meeting to Elika and reported back to the council that Elika and Jennifer will be attending the next council meeting. Thank you Karen. 

 Virtual Meeting Proposal: Brian E reviewed questions, concerns and feedback regarding virtual clinic visits. Stating we as a council agree this concept is not to replace physical clinic visits. You still would have to commit to coming in to the clinic a couple of times of year. This concept could eliminate the phone tag issues. Also be easy for a discharge patient for their follow up visit. The wording in the proposal needs to be changed to state that this would make a patient more compliant. Brian submitted a brief description about MyHealth and the  concept of the Virtual Clinic Visit to the CFF webpages idea box. Asking if there was any other clinics or hospitals currently using this concept. He received an email back stating that this concept was  already in the works. He had a conversation with  a staff member from CFF and they mentioned two major projects in the works over the next five years.                 (Focus on Adherence, and Improving the Voice of CF Adults). Within three months CFF will contact the council regarding the virtual clinic proposal.            

                                                                           

Proposal for New Projects: Updating the Return Patient Questioner form. Making the form more useful and modernized by linking it to MyHealth. 

Tasks Assigned:  

MyHealth interview: Any council members still scheduled to have their round 2 interviews  provide a quick summary with any feedback from your interview that you would like to share with the council at next months meeting. Also offer a suggestion to the MyHealth team that creating a reminder alert for patients regarding the Return Patient Questioner is available for use.

Devin: Write a post on the Facebook pages asking CFers "parking cheats" that anyone knows about. Collect the data, and contact Guest Services, and the CF Clinic to see if these "parking cheats" are legit. Then create a PDF for next months meeting. 

Ann / Angel: Contact and investigate other advisory boards to see what other councils are doing, how they function and do all hospitals have an advisory board? 

Colleen: contact the editor of the newsletter regarding a questions and answer section. The council comes up with a general question and staff can answer and have it published in the newsletter. 

Brian E meeting with Joan today June 19th to gather feedback on the previous tasks assigned to Joan . 

All Members:  Open suggestions "in what ways can CFRI improve and increase resources / outreach programs in the community." Currently CFRI provides The Discovery Series, Community Newsletter, Educational DVD's and the Annual Educations Conference. Think of other ways to reach out? 

Meeting called to a close at 6:30pm                                                                                                                             

Next meeting will be on July 16th.