1. OneCFCenter LLC Team Learning Session
December 1, 2014

2. December 1, 2014 Agenda
3:30-3:35 Welcome and Sign ons 3:35-3:55 Smart Change Idea: Pedi to Adult Transition: CF RISE experience Greg Sawicki and Patrick Flume 3:55-4:05 Questions/ Clarifications 4:05-4:15 Review of OneCF LLC Extension dates and survey table (survey prep to be done) 4:15-4:25 Review of OneCF LLC website 4:25-4:55 3 minute progress report on measurement, RC, Conflict management or improvements 4:55-5:00 Summary and review of action items until January 5 Adobe Session. (Please complete the QIKAT surveys Feb 2–16, 2015)

3. OneCF Center LLC
Overall Aim: Assess and develop a CF care center that provides seamless care from the time of diagnosis through advanced care. We focus on integrated care, smooth transitions, warm handoffs and transfers, and improvement of the mesosystem community especially transition from pediatric to adult care (the hand off).

4. OneCF Centers & Coaches
Location
Coaches
(Emory & Scottish Rite)
Randy and Staci
Dell Children’s Medical Center
John and Mary
Dallas/UT Southern
Bob
East Tennessee *
Judy and Kathryn
Helen DeVos *
Lacrecia and Kathy
Jack Gorvoy Center for CF Care
Donna Beth
Cleveland Ohio
Randy and Jeanne
Toledo Ohio
Paula and Suzanne
* These two sites are not on the AC sessions and will repeat the the surveys with the rest of the OneCF LLC

5. From Diagnoses through Advanced Care

6. Atlanta Helpful Tools & Resources

7. A new educational program to help improve patient transition and self-care skills
Greg Sawicki, MD
Patrick Flume, MD
CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead.
CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead.

8. CF Transition and Ownership of Care
Introducing a NEW program
to facilitate transition
CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead.
© 2014 Gilead Sciences, Inc.
All rights reserved. 10/2014 UNBP0964
CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead.

9. Challenges in CF Transition
As the median survival increases, the need for transitioning to adult care centers increases as well 1
Initial discussion of transition occurred at a median age of 17 years 2
Transfer of care occurred at a median age of 19, with a range of 14 to 30 years
Half of programs allow patients to delay or decline transition
Only 28% of programs consistently offer visits or clinics focused on transition 2
Fewer than 25% of programs “usually” or “always” provide educational materials about transition to patients and families 2
Source:
1. Sarah R. Chaudhry, MPH, Meghan Keaton, MD, and Samya Z. Nasr, MD, Evaluation of a Cystic Fibrosis Transition Program From Pediatric to Adult Care, Pediatric Pulmonology 48:658–665 (2013).
2. McLaughlin, Suzanne Elizabeth, et al. Improving Transition From Pediatric to Adult Cystic Fibrosis Care: Lessons From a National Survey of Current Practices. Journal of the American Academy of Pediatrics, Dec 2008.
CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead. 9

10. Challenges in CF Transition (cont’d)
Fewer than half provide a transition timeline or designate a specific team member to be responsible for key elements of transition 1
Only half of CF programs consistently perform readiness assessments, and <10% have a written list of desirable self-management skills 1
Lack of communication between CF care teams, patients, and parents 2
Sources:
McLaughlin, Suzanne Elizabeth, et al. Improving Transition From Pediatric to Adult Cystic Fibrosis Care: Lessons From a National Survey of Current Practices. Journal of the American Academy of Pediatrics, Dec 2008.
Parker HW. Transition and transfer of patients who have cystic fibrosis to adult care. Clin Chest Med. 2007;28(2):
CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead.
CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead. 10

11. Program Objectives
Provide CF care teams with a toolset that can be flexibly adapted across centers to manage transition and transfer
Help to facilitate communication between pediatric & adult care teams and patients & caregivers
To complement the conversations you may already have around transition
CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead.
CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead. 11

12. Meet the Transition Advisory Council
CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts across pediatric and adult teams and is sponsored by Gilead.
Diane Acquazzino, BS
University of Nebraska
Medical Center (pediatric)
Craig Lapin, MD Connecticut Children’s Hospital (pediatric)
Alexandra Quittner, PhD
University of Miami
Tara Barto, MD
Baylor College of Medicine (pediatric & adult)
Samya Nasr, MD, CPI
University of Michigan (pediatric)
Kristin Riekert, PhD
Johns Hopkins University (pediatric & adult)
Elizabeth Bryson, MSN, PPCNP-BC, CS
Akron Children's Hospital (pediatric & adult)
Kecia Nelson, MSW, LCSW University of Missouri Children's Hospital (pediatric & adult)
Greg Sawicki, MD
Boston Children’s Medical Center (pediatric)
Patrick Flume, MD
Medical University of South Carolina (adult)
H. Worth Parker, MD Dartmouth-Hitchcock Medical Center (pediatric & adult)
Jonathan Spahr, MD
University of Pittsburgh School of Medicine (pediatric)
Mary Helmers, RN, BSN Lucile Packard Children's Hospital at Stanford University (pediatric) 12
CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead.

13. CF R.I.S.E. Tools Clinic Tools Patient Tools Digital Portal
Program Resource Binder
Program Guide
Customizable letter/ template
Patient Tools
Welcome letter/
CF Knowledge Assessments
Responsibilities Checklists
Progress Report
Educational Resource Guide
Digital Portal
Automates the scoring and remediation process and archives patient progress
Responsive design adapts to desktop, tablet, or mobile format
Patients can access right from their smart phone during office/clinic visit
CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead.
CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead. 13

14. Sample Questions from CF Knowledge Assessments
COLLEGE & WORK
INSURANCE & FINANCIAL
CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead.
CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead.

15. Responsibilities Checklist for Patient & Support Person
Assesses level of responsibility for 6 areas of CF care and lifestyle management
Responsibility scale differs slightly for patient and support person
CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead.
CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead.

16. CFRISE.com Patient website HCP website Why Go Digital?
Knowledge Assessments with direct links to educational resources
Responsibilities Checklists
History of results
Option to results
HCP website
Knowledge Assessments (overall clinic score)
Current Patients (with individual results)
Why Go Digital?
Adaptable to viewing on a desktop, tablet or mobile format
Ease of access since patients and clinicians can login at anytime
Time-saving, automated scoring and remediation process
Longitudinal tracking of patient results over time
CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead.
CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead. 16

17. Patient & Clinician Website
Patient website
Clinician website
Each of your patient’s will need to enter a PATIENT code upon registration (example: ABCP)
You will receive the patient code via after this call
Each provider at your center will need to enter your CLINIC code upon registration (example: ABCC)
You should have already received an with this information
CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead.
CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead. 17

18. Considerations for Implementation
Include full CF care team, including pediatric and adult providers and CF center Director(s)
Hold training on non-clinic day in a distraction-free environment (conference room, off-site)
Clearly identify roles and responsibilities of all care team members
Brainstorm barriers to implementation and a clear action plan to overcome those barriers
Have the entire care team take Knowledge Assessments to gain familiarity with content
Create an “Action Plan” that will govern how the program will be formally adopted within the clinic routine
CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead.
CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead.

19. OneCF LLC Extension Dates
Upcoming Adobe Sessions:
January 5, :30-5pm
February 2, :30-5pm
Final Face-to-Face Meeting:
Thursday March 26, 2015
1-5pm Coaches & Leaders
6-9pm Teams/Dinner
Friday, March 27, 2015
8am-1pm Everyone with overlap with LLC2 “All Teach, All Learn”
Activities to Complete:
Submit progress report by
December 29
Leadership survey
January 5–19, 2015
Post-QIKAT surveys for teams
February 3–16, 2015
Repeat RC surveys
March 2-13, 2015

20. OneCF LLC Website

21. Measurement, RC, Conflict management or improvements
3 Minute Progress Reports Jack Gorvoy Center, Dell Children’s, Dallas/UT, Cleveland, Toledo
Measurement, RC, Conflict management or improvements

22. Summary and Actions Updates on individual OneCF Centers
Update on CF Rise to add to our SmartChange Ideas
Updates on dates, activities and website
Continue improvement, relationships, leadership and measurement of OneCF Center

23. www.clinicalmicrosystem.org Please complete the survey monkey
Our Next session is January 5th
Happy Holidays