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
OneCF Center
Aim: Assess and develop a CF Care Center that provides seamless care from the time of diagnosis through advanced
care. Patient centered integrated team care, smooth transitions, warm hand-offs, transfers and mesosystem
improvement will be central to our improvement efforts.
Specialty Referrals
- Gastroenterology,
endocrine, OB/GYN,
Transplant, Palliative Care
- Psychology/Psychiatry
Inpatient Unit
Emergency Department
Primary Care
Screening
Pediatrics
(with parents)
Advanced Care
Adults
Emerging Adults (18-25)
Young Adults (26-35)
Middle Age Adults (36-65)
Senior Adults (65+)
DX
Baby
Care
Exacerbations
?Hospitalization
CFRD
PediAdult
Transition
Reproduction
Mental
Health
Safe, Timely, Effective, Efficient, Equitable, Patient Centered
L
Lung
Transplant
Advanced
Care
Csre
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.
7
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.
8
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 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:
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.
2. 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
CF R.I.S.E. was developed in collaboration
with
team of CF experts
andaismultidisciplinary
sponsored by Gilead.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
CF R.I.S.E. was developed in collaboration
with
team of CF experts
andaismultidisciplinary
sponsored by Gilead.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
Craig Lapin, MD
University of Nebraska
Medical Center (pediatric)
Connecticut Children’s
Hospital (pediatric)
Tara Barto, MD
Samya Nasr, MD, CPI
Kristin Riekert, PhD
Baylor College of Medicine
(pediatric & adult)
University of Michigan
(pediatric)
Johns Hopkins University
(pediatric & adult)
Elizabeth Bryson, MSN,
PPCNP-BC, CS
Kecia Nelson, MSW,
LCSW University of Missouri
Greg Sawicki, MD
Akron Children's Hospital
(pediatric & adult)
Children's Hospital (pediatric &
adult)
Patrick Flume, MD
H. Worth Parker, MD
Jonathan Spahr, MD
Medical University of South
Carolina (adult)
Dartmouth-Hitchcock Medical
Center (pediatric & adult)
University of Pittsburgh School
of Medicine (pediatric)
Alexandra Quittner, PhD
University of Miami
Boston Children’s Medical
Center (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



 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



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
CFwas
R.I.S.E.
was developed
in collaboration with
multidisciplinary
team ofteam
CF experts
andexperts
is sponsored
CF R.I.S.E.
developed
in collaboration
witha a
multidisciplinary
of CF
andbyisGilead.
sponsored by Gilead.
13
Sample Questions from
CF Knowledge Assessments
COLLEGE & WORK
INSURANCE & FINANCIAL
CF R.I.S.E.
was developedinincollaboration
collaboration with
a multidisciplinary
team of CF
experts
and is
sponsored
by is
Gilead.
CF R.I.S.E.
was developed
with
a multidisciplinary
team
of CF
experts
and
sponsored by Gilead.
14
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 developedinincollaboration
collaboration with
a multidisciplinary
team of team
CF experts
and experts
is sponsored
by is
Gilead.
CF R.I.S.E.
was developed
with
a multidisciplinary
of CF
and
sponsored by Gilead.
15
Patient website
•
•
•
•
CFRISE.com
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
CFwas
R.I.S.E.
was developed
in collaboration with
multidisciplinary
team ofteam
CF experts
andexperts
is sponsored
CF R.I.S.E.
developed
in collaboration
witha a
multidisciplinary
of CF
andbyisGilead.
sponsored by Gilead.
16
Patient & Clinician Website
Patient 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
Clinician website
• 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
CFwas
R.I.S.E.
was developed
in collaboration with
multidisciplinary
team ofteam
CF experts
andexperts
is sponsored
CF R.I.S.E.
developed
in collaboration
witha a
multidisciplinary
of CF
andbyisGilead.
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
multidisciplinary
team of CF experts
CF R.I.S.E. was developed in a
collaboration
with a multidisciplinary
team of CF experts and is sponsored by Gilead.
and is sponsored by Gilead.
18
OneCF LLC Extension Dates
Upcoming Adobe Sessions:
Activities to Complete:
- January 5, 2015 3:30-5pm - Submit progress report by
- February 2, 2015 3:30-5pm
December 29
- Leadership survey
Final Face-to-Face Meeting:
January 5–19, 2015
Thursday March 26, 2015
- Post-QIKAT surveys for
teams
1-5pm Coaches & Leaders
- February 3–16, 2015
6-9pm Teams/Dinner
- Repeat RC surveys
Friday, March 27, 2015
March 2-13, 2015
8am-1pm Everyone with
overlap with LLC2 “All Teach,
All Learn”
OneCF LLC Website
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
Please complete
the survey monkey
Our Next session is
January 5th
www.clinicalmicrosystem.org
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Happy Holidays