OneCFCenter LLC Team Learning Session December 1, 2014

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)

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).

OneCF Centers & Coaches Location Coaches CF@Lanta (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

From Diagnoses through Advanced Care

Atlanta Helpful Tools & Resources

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.

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.

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

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):423-432. 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

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

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.

CF R.I.S.E. Tools Clinic Tools Patient Tools Digital Portal Program Resource Binder Program Guide Customizable letter/e-mail template Patient Tools Welcome letter/e-mail 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

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.

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.

CFRISE.com Patient website HCP website Why Go Digital? Knowledge Assessments with direct links to educational resources Responsibilities Checklists History of results Option to email 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

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 Email 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 Email 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

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.

OneCF LLC Extension Dates Upcoming Adobe Sessions: January 5, 2015 3:30-5pm February 2, 2015 3:30-5pm 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

OneCF LLC Website

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

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

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