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OneCFCenter LLC Team Learning Session December 1, 2014.

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Presentation on theme: "OneCFCenter LLC Team Learning Session December 1, 2014."— Presentation transcript:

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 LocationCoaches (Emory & Scottish Rite)Randy and Staci Dell Children’s Medical CenterJohn and Mary Dallas/UT SouthernBob East Tennessee *Judy and Kathryn Helen DeVos *Lacrecia and Kathy Jack Gorvoy Center for CF CareDonna Beth Cleveland OhioRandy and Jeanne Toledo OhioPaula 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 CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead. A new educational program to help improve patient transition and self-care skills Greg Sawicki, MD Patrick Flume, MD 7 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. 8 © 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 o Transfer of care occurred at a median age of 19, with a range of 14 to 30 years o 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 CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead.

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 CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead. Sources: 1.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.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 Parker HW. Transition and transfer of patients who have cystic fibrosis to adult care. Clin Chest Med. 2007;28(2): 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.

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. 11 CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead.

12 Meet the Transition Advisory Council Tara Barto, MD Baylor College of Medicine (pediatric & adult) Elizabeth Bryson, MSN, PPCNP-BC, CS Akron Children's Hospital (pediatric & adult) Mary Helmers, RN, BSN Lucile Packard Children's Hospital at Stanford University (pediatric) Craig Lapin, MD Connecticut Children’s Hospital (pediatric) Samya Nasr, MD, CPI University of Michigan (pediatric) Kecia Nelson, MSW, LCSW University of Missouri Children's Hospital (pediatric & adult) H. Worth Parker, MD Dartmouth-Hitchcock Medical Center (pediatric & adult) Kristin Riekert, PhD Johns Hopkins University (pediatric & adult) Greg Sawicki, MD Boston Children’s Medical Center (pediatric) Alexandra Quittner, PhD University of Miami Diane Acquazzino, BS University of Nebraska Medical Center (pediatric) 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. Patrick Flume, MD Medical University of South Carolina (adult) Jonathan Spahr, MD University of Pittsburgh School of Medicine (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  Program Resource Binder  Program Guide  Customizable letter/ template  Patient Tools  Welcome letter/  CF Knowledge Assessments  Responsibilities Checklists  Progress Report  Educational Resource Guide CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead. 13  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.

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. 14 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. 15 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 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. 16 CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead.

17 Patient & Clinician Website Patient website CF R.I.S.E. was developed in collaboration with a multidisciplinary team of CF experts and is sponsored by Gilead. 17 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.

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. 18 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, pm Coaches & Leaders 6-9pm Teams/Dinner Friday, March 27, am-1pm Everyone with overlap with LLC2 “All Teach, All Learn” Activities to Complete: -Submit progress report by December 29 -Leadership survey January 5–19, Post-QIKAT surveys for teams -February 3–16, Repeat RC surveys March 2-13, 2015

20 OneCF LLC Website

21 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 23 Please complete the survey monkey Our Next session is January 5th Happy Holidays


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