ImproveCareNow Virtual Community Conference Spring 2017

Welcome! Let’s start the
conversation…
Type in the chat/question
box:
• How many years of
experience do you have
living with IBD and/or
caring for someone with
IBD?
2

Welcome to the Virtual Community
Conference!
3

Reminders
If you typed your
name at login,
you are already
counted in
attendance
If more than one
person is viewing,
please type
additional names
in the chat box
Please do not use
you phone’s hold
feature, but
rather place the
call on mute
This call is being
recorded and will
be shared via
social media and
other channels
after the call.

Let’s practice! Type in the chat box:
How many years of experience
do you have living with IBD
and/or caring for someone with
IBD?

Let’s Practice!
Please respond to poll question #1!

Agenda: Join for As Long as You Can!
4:00-4:25 pm: Welcome and Overview: How we Work Together in the
ImproveCareNow Community
4:25-5:35 pm: Our Quality Improvement Foundation
5:35-6:35 pm: Research Updates and Highlights from the Spring
Community Conference
6:35-7:35 pm: Building our Community: A Growing & Dynamic Portfolio
of Parent and Patient-Driven Projects
7:35-8:00 pm: Getting Involved and Finding your Place
9

(Virtual) conferences are…
• A way to reach more people
• An opportunity to celebrate
• Great for meeting new people
• Crowded (in a good way!)
• Casual (people may drop in and out)

What Do We Want To Accomplish?
Your knowledge and awareness of the
ImproveCareNow Community will increase
You will be better able to describe various
opportunities to get involved in the community
You will hopefully hear about something with
which you might like to get involved

ImproveCareNow Network
Currently 96 centers have joined ImproveCareNow, including 93 centers in 36 states and the
District of Columbia, two in England and one in Qatar. These 96 centers have 795 pediatric
gastroenterologists and 26,000 patients with IBD.

Celebrating 10 Years of Improvement
and Innovation!

So Many Reasons to Celebrate in
ImproveCareNow
More kids in remission doing the things they want to do
A solid and innovative quality improvement foundation
New opportunities to discover new knowledge together via
research
A growing and dynamic portfolio of parent & patient driven
projects
So many ways to participate!

ImproveCareNow aims to…
Transform the health, care and costs for all
children and adolescents with Crohn’s disease
and ulcerative colitis by building a sustainable
collaborative chronic care network, enabling
patients, families, clinicians and researchers to
work together in a learning health care system
to accelerate innovation, discovery and the
application of new knowledge.
17

1
ImproveCareNow Key Driver Diagram
Global AIM:
Improve the care and
health o all children and
adolescents with Crohn’s
disease and ulcerative
colitis
-
REGISTRATION AND DATA QUALITY
• Identify and register all eligible patients
• Develop standardized template for data
elements
• Collect and enter visit data for all
patients on a timely basis
• Develop and implement a data quality
plan
PRE-VISIT PLANNING (PVP)
• Review important data via automated
PVP reports or other format
• Obtain or provide additional information
to the patient
• Identify and arrange for needed
resources
• “ ”
outside of protocol guidelines
• When feasible, meet as a team to review
patients and determine
CONSISTENT RELIABLE CARE
• Implement Model IBD Care with reliability
of >90%
• Implement Pediatric IBD Nutrition
Algorithm with reliability of >90%
SELF-MANAGEMENT SUPPORT (SMS)
• Provide patient education
• Define team roles and responsibilities for
SMS
• Elicit patient and family priorities for
visits
• Confirm patient understanding of new
information
• Set patient goals collaboratively
• Monitor & document progress toward
SMS goals at each visit
POPULATION MANAGEMENT (PM)
• Insure patients are being seen regularly
• Contact those who have not been seen in
past 6 months
• Score patients using risk stratification
scale
• Identify patients/subgroups for proactive
care
• Design, coordinate and manage care for
specific segments of the practice
population
• Regularly review automated PM reports .
19

Key drivers of excellent IBD care and
outcomes
Optimal access and communication
Proactive, timely, reliable care
Accurate diagnosis and disease classification
Appropriate drug selection and dosage
Optimal nutritional intake
Optimal psychosocial health
Optimal self-management and adherence
20

Daily work across the community in all
of these areas!
“As part of pre-visit planning, we identify patients 16 and older coming to
clinic during the week. Our SW tries to meet with all of them to begin
discussing self-management techniques that will better prepare them for
transition to adult care.”
“We will be working on creating a support group run by our
outpatient social worker. More to come soon.”
“We are planning to incorporate patient education
online resources via I-pads to be used during IBD clinic
visits. This is in the early stages of planning, and will
be headed by our clinic IBD nurse.”
“One PDSA cycle was done to test a way
to find the patients that have not been
seen for more than 4 months”
21

From Network to Community…
25

From Network to Community
• Communities have stories
• Communities grow
• Communities are made up of smaller
communities
• Communities learn together
• Communities celebrate each other

More kids in remission
doing the things they
want to do

We Participate.
(that means you….)

Throughout the call, think about what can
you do today? By next Tuesday?
Connect with ImproveCareNow
• Choose the plat orm that’s right or you and
connect—www.improvecarenow.org
Help another person connect
• Set a goal to connect one other patient,
parent, colleague

Scavenger hunt #1
Go to www.improvecarenow.org
Type one o the data points on the “our
success” in ographic that most piques your
interest (hint=“Purpose and Success”)
Go!

Our Quality
Improvement
Foundation

Setting our Course:
ImproveCareNow Model Care
Guidelines
4:25-4:40 pm EST

1
Global AIM:
colitis
-
elements
plan
to the patient
resources
• “ ”
of >90%
SMS
visits
information
past 6 months
scale
care
population

https://d3n8a8pro7vhmx.cloudfront.net/improvecarenow/pages/283/attachments/origi
nal/1464375801/Model_IBD_Care_Guideline_2016.pdf?1464375801

Improvement at the Care Center
Level: Social Work Driven Self-
Management and Transition
4:40-5:00 pm EST

Building A Social Work-Driven Self-Management and
Transition Program
Erin Holbrook, MSW, LSW
IBD Social Worker/Transition Coordinator
Cincinnati Children’s Hospital Medical Center

Inception of Transition of Care Program
• We identified a need to ensure proper education and
preparation for older teenage and young adult patients for
successful transition and transfer to adult GI care, which is
crucial for long-term healthy outcomes.
• How we identified this need: Using our ICN registry, we
identified 400+ patients, aged 16 and older, yet:
 we had no tools or measuring a patient’s ability to manage
their care once they turned 18
 we had no formal process for transferring their care to an adult
GI care when appropriate.

Using a QI approach to address this gap
•PDSA
• Plan
• Do
• Study
• Act

Our Aim
• To identify patient, provider, and system-level
changes which can develop and improve a
successful self-management and transition of care
program that will lead to improved IBD outcomes

Plan: Finding an appropriate measurement tool
• We had no measurement tool for assessing patient readiness
or transition to adult care, until we ound…
• Transition Readiness Assessment Questionnaire
(TRAQ)
• Only validated assessment tool used within CCHMC
• First PDSA: test with over age 21 to see how it worked in
clinic
• Pt completes TRAQ every 6 months to track their progress

Plan: Patient identification
• Identification of patients:
• Use pre-clinic planning (PCP) to identify patients
• List o next week’s appointment or all IBD patients
• Weekly, interdisciplinary PCP meeting
• MDs
• RNs
• Program Manager
• Social Work
• Psychology
• Research

Plan: Where to begin?
• Start small
21 y.o.+
18 y.o.
IBD specific MDs
Remainder of MDs
• Buy in from MDs and RNs (non-IBD providers)
• Barriers
• Small data set used to illustrate the need for enhanced self-
management and transition education

Do: Provider buy-in to address barriers
• First 66 patients who completed the TRAQ
• CCHMC benchmark for mastery is 90/100
• Average TRAQ score 72 (out of 100)
• Out of 66 TRAQ forms completed, only 4 patients hit our
benchmark
6.1%
93.9%
% of CCHMC patients aged 16-
23 years meeting transition
readiness benchmark
Patients
hitting
Benchmark

Do: Patient-level changes We Tested: IBD Education Tools
“Birthday letter” on patient’s 14th birthday
TRAQ Assessment
Self-Management Handbook
Self-Management Skill Checklist
Skills/tasks listed by age ranges
Self-Management Problem-Solving Scenarios
Going to College with IBD
IBD U (IBD University)

Do: Self-management skills & goal setting
Adherence strategies for medication compliance
Using the pharmacy
Scheduling appts
Keeping a calendar for upcoming appts
Saving medical team phone numbers in pt’s cell phone
Know what to do when you’re eeling ill

Model Patient – “Perfect Patty”
• Age 14 – introduction to concept of self-
management
• (“Birthday letter” mailed out or Patty’s 14th birthday)
• Initial TRAQ assessment (baseline level of mastery)
• Self-management checklist
• Self-management handbook
• Goal setting

• Age 14-17
• Completion of TRAQ assessment every 6 months
• Ongoing goal setting during clinic visits
• Age 17-18
• TRAQ assessment
• Continued goal setting
• Discussion o Patty’s post high school plans (college, employment,
moving away from home, etc.)
• Going to College with IBD

• Age 18-22
• TRAQ assessment
• Continued goal setting (if needed)
• Self-management problem-solving scenarios
• IBD U
• Transfer to adult GI care

Do: Collaboration with Community Adult Providers
• These collaborations are essential for program success
Prevents “bouncebacks”
Ensures direct communication re: specific patient needs
that one may not glean from medical records
Provides opportunities for research regarding long-term
transition and health outcomes for adult IBD patients.

Study: Results and success thus far
Engagement of 93% of 14 y.o.+ patients in our self-
management program
Total # of patients transferred to date: 182
Total # o “bounceback” patients to date: 3 (insurance
issues)
# of IBD patients 22 years & older: 17 (~750)

Study: Self-Management Program success
• Compare overall changes in transition readiness from TRAQ 1 (pre-SW
encounter) to TRAQ 2 (post-SW encounter)
• Aim: Transition readiness (Total TRAQ score) will improve after the SW
encounter
• Compare acquisition of self-management skills
• Aim: Self-management skill acquisition (Number of skills mastered) will
increase after SW encounter

Study: Self-Management Program success
• Patients who participated in self-management program with SW improved
their transition readiness score and number of self-management skills
mastered
• Increase in TRAQ score
• Pre-SW encounter – avg TRAQ score of 68
• Post SW encounter – avg TRAQ score of 74
• Increase in # of skills mastered
• Pre-SW encounter – avg 7 of 20 skills
• Post SW encounter – avg 9 of 20 skills

Study: Improved outcomes for sustained remission
• That’s the ultimate goal, right?
• If our patients are taking better care of themselves,
they’re able to stay in remission, both improving
health outcomes and lowering healthcare costs

Study: Improved outcomes for sustained remission
Transitioncoordinatoraddedtoteam
Physicianreviewofactivepatients7
Spreadself-managementtoage16+
Beginmonthlyintervistpopulation
management
Newbiologicdrugmonitoringguidelines
Spreadself-managementsupporttoage
14+
Carealgorithmconsensus(inflximab)
0
10%
20%
30%
40%
50%
60%
70%
2011-04(n=005)
2011-05(n=046)
2011-06(n=108)
2011-07(n=136)
2011-08(n=173)
2011-09(n=186)
2011-10(n=211)
2011-11(n=231)
2011-12(n=245)
2012-01(n=256)
2012-02(n=261)
2012-03(n=273)
2012-04(n=285)
2012-05(n=289)
2012-06(n=287)
2012-07(n=286)
2012-08(n=291)
2012-09(n=282)
2012-10(n=287)
2012-11(n=294)
2012-12(n=297)
2013-01(n=300)
2013-02(n=297)
2013-03(n=294)
2013-04(n=291)
2013-05(n=293)
2013-06(n=303)
2013-07(n=300)
2013-08(n=309)
2013-09(n=306)
2013-10(n=312)
2013-11(n=318)
2013-12(n=318)
2014-01(n=319)
2014-02(n=320)
2014-03(n=324)
2014-04(n=319)
2014-05(n=319)
2014-06(n=314)
2014-07(n=320)
2014-08(n=324)
2014-09(n=324)
2014-10(n=325)
2014-11(n=318)
2014-12(n=323)
2015-01(n=327)
2015-02(n=327)
2015-03(n=326)
2015-04(n=327)
2015-05(n=330)
2015-06(n=337)
2015-07(n=342)
2015-08(n=342)
2015-09(n=350)
2015-10(n=365)
2015-11(n=367)
2015-12(n=371)
2016-01(n=379)
2016-02(n=383)
2016-03(n=387)
2016-04(n=388)
2016-05(n=395)
2016-06(n=392)
2016-07(n=399)
2016-08(n=401)
2016-09(n=411)
2016-10(n=425)
2016-11(n=430)
2016-12(n=440)
2017-01(n=450)
2017-02(n=455)
2017-03(n=456)
%ofPatientsinSustainedRemission
Month
% of Patients in Sustained Remission
% of Patients in Sustained Remission Median Goal

• ACT: Current Program Package
• Current program
Pre-clinic planning
TRAQ on tablet, q6 months, 14+ y.o. patients
Ongoing goal setting with Pt for self-mgmt skills
SW follow up with patients every 3-6 months
Continued use of Tele-Medicine
Established process for transfer to adult GI care

Act: Next Steps
 Working to expand Telemedicine opportunities at
additional satellite clinics to increase patient engagement
in the program
 May consider different approach for younger patients
 Begin disease education at 12 y.o.
 Begin self-management education at 14 y.o.
 Utilize collaboration with community adult practices for
research on long-term outcomes of transferred patients

What can you do today? By next Tuesday?
Connect with ImproveCareNow
• Choose the plat orm that’s right or you and
connect—www.improvecarenow.org
Help another person connect
• Set a goal to connect one other patient,
parent, colleague

A Community-Wide Priority: Pre-
Visit Planning in ImproveCareNow
5:00-5:35 pm EST

68
Unintended Variation in Care
Patients receive only 60% of
recommended care:
Unintended variation:
Not explained by illness, patient preference, or
evidence based medicine
May contribute to underuse, misuse, and overuse of
medical and surgical services
Often due to inadequate care delivery systems

Unintended Variation in Care
There is a gap between
recommended care and the care
actually carried out
If medical care were more reliable, would
outcomes be better?
“Do what we say 100% of the time”

Wagner EH. Chronic disease management: what will it take to improve care for chronic illness? Eff Clin Pract. 1998;1:2-4.
70

1
Global AIM:
colitis
-
elements
plan
to the patient
resources
• “ ”
of >90%
SMS
visits
information
past 6 months
scale
care
population
71

Please type in the chat box:
What do you wish your care team
knew before your visit?

Discussion
Preparation
Productive
Interaction
Follow Up
Prepared, Proactive Practice Team

Pre-visit Planning Components
The goal of pre-visit planning is to prepare for an
efficient, quality patient visit. It may include:
• Review of important data prior to the visit
• Obtaining from, or providing to the patient
additional information, prior to visit
• Testing prior to the visit
• Identifying/arranging resources prior to visit
• Team meetings or “huddles” to review patient
plans

Perianal Phenotype: No 12/6/2014 Negative 5/6/2014
>> Visits: 05/01/2014 07/03/2014 08/14/2014 09/18/2014 10/30/2014 12/04/2014 01/22/2015 03/19/2015 Age of Result
PGA Quiescent Quiescent Mild Quiescent Quiescent Quiescent Quiescent Quiescent
Nutritional Status Satisfactory Satisfactory Satisfactory Satisfactory Satisfactory Satisfactory Satisfactory Satisfactory
Growth Status Satisfactory Satisfactory Satisfactory Satisfactory Satisfactory Satisfactory Satisfactory Satisfactory
Albumin 4.6 4.1 4.1 3.9 4.2 4.2 4.2 4.2 6 mo
CRP 1.50 0.50 3.00 1.20 1.20 1.00 1.10 1.20 6 mo
ESR 2.0 7.0 8.0 9.0 10.0 6.0 10.0 37.0 6 mo
Hematocrit 41.0 36.6 37.0 39.4 40.5 39.1 37.2 38.9 6 mo
*Result date may differ from visit date Lab ordering guidelines: 5-ASA:q6mo 6mp/ASA/MTX:q3-4mo Biologics:q2-3mo
Care Stratification
CS Score CSS Group
Current
Disease Activity
12 Month
Disease Activity
BMI Z-Score Ht Velocity
Hosp Adm
within 3
months
Currently on
Cortico
Cortico last
12 months
Psychosocial
Risk Factors
1 0-3 (Low) 0 (Quiescent) 0 (Quiescent) 0 (BMIZscore >=-1 or
Missing)
0 (HtVelocityZscore
>=-1 or Missing or
N/A)
0 (No or Unknown) 0 (No or
Unknown)
1 (Yes) No
>> Treatments Dose (mg) mg/kg (last wt) Guideline Attention Needed
Immunomodulators
Thiopurines TPMT
date / result
Normal/high (4/11/2011)
Consideration: If active dz, consider 6TGN levels q 90
Biologics
Adalimumab/Humira 40.0 0.7
Other Labs Levels Dates Levels Dates Notes
6MP Patients 6-TGN: 332.0 7/7/2013 6MMPN: 3075.0 7/7/2013
Considerations: The following are general items for your consideration as you establish a plan for your patient. They are not applicable to all patients. Similarly, evaluation
and testing beyond those noted below may be indicated. These considerations should not be used in place of your clinical judgement.
CBC: Consider an order for Hematocrit. Patient on biologics and date of last result more than 60 days ago.
ESR: Consider an order for ESR. Patient on biologics and date of last result more than 60 days ago.
CRP: Consider an order for CRP. Patient on biologics and date of last result more than 60 days ago.
Albumin: Consider an order for Albumin. Patient on biologics and date of last result more than 60 days ago.
Additional considerations for patients in REMISSION:
• Consider careful assessment of medication adherence

Prim. Provider: () Birth Date: {DOB} Race: {Race} DX Date: 3/2/2003 Last Visit: 280 days
Ht: 181.86 Wt: 61.70 Nutr Status: In failure
Pre-Visit Planning
onal Satisfactory
At risk
In failure
Missing / Not
Applicable / Not
Assessed
Quiescent
Mild
Moderate
Severe
Missing / Don't
Know
AI
medications
Humira
Methotrexate
labs
Albumin
CRP
ESR

Leveraging Our Quality Improvement
Approach
Each team uses the Model for Improvement and PDSA cycles to
learn how best to integrate pre-visit planning into their workflows
We use our network communication (the Exchange) and learning
channels to spread the best ideas to centers that are just getting
started
A number of centers are working on integrating the patient voice
into pre-visit planning
Pre-clinic labs are an important new component for some centers,
as well.
77

A little bit about us…
Located in Boston, MA with 12 satellite centers in MA and NH
Large Pedi GI staff
23 attending physicians
2.7 nurse practitioners
4.5 outpatient nurses
6 fellows
1 clinical research coordinator
4 dieticians
4 core ICN providers
Target pediatric IBD population of ~700
Part of ICN since 2009

Identifying PVP
Weaknesses/Challenges
Large target population spread out across many,
many satellite clinics
Range in provider styles, personalities, experience,
time available
We have some high volume providers that see
patients as many as 10 sessions per week
Difficult for them to review their patients prior to
appointment
Hard to find a time for providers to meet (even core
ICN providers only)

Prior Attempts at Pre-Visit Planning
1. 2011 - 2012 (inconsistent)
(Hot- spotting): Identifying patients with a Care Stratification
Score > 7
Email providers to alert them that they had a patient with high
CSS score, occasionally with actual recommendations about
what to do
2. 2013
CSS > 7
Email providers the automated PVP form; ask them what
change to treatment that they would recommend
Never expanded past two providers
Conclusion: We already knew about most of the sickest patients
(CSS>7); Needed a process to disseminate information; We
weren’t addressing health maintenance issues

What did we need to get this to work?
Previous failed attempts (trial and error)
Or else we wouldn’t know what wasn’t sustainable!
Support from ICN staff and other centers
Buy in from a core group of providers
A stimulus driving us to make this happen
Support from our physician group
Accurate, timely data entry
Time
A “JUST DO IT” attitude

Evolution of our Current PVP Process
Born out of the 2014 Fall Community
Conference
Started one week later with 2 MDs,1 RN, and 1 RC
reviewing one provider’s patients
Followed the “start small”, one doctor/one patient
dictum of QI

Evolution of our Current PVP Process
Added providers incrementally until we reached all providers
Accounts for 90% of the IBD patients being seen in our
clinics – all patients enrolled in ICN
Now, our meetings include:
A core ICN team of 4 MDs and 1 RC and 1 Social Worker
Our first and second year fellows (n = 4)
The inpatient attending physician (when available)
Residents and rotating medical students
Any other attending, fellow, or RN/NP/RD that wants to
attend
Often a venue for bringing challenging patient issues up for
collaborative discussion

Pre-Visit Planning Process
Examples of suggestions that we have made:
“I still symptomatic at next visit, consider discussing
escalation o therapy”
“Increase Mesalamine dose to 4 8 g/day”
“Consider a capsule endoscopy to assess response to
Adalimumab therapy, and consider changing to another
agent i disease activity present/not improved”
“Consider dietician eval and HC nutritional supplements to
help reestablish healthy weight gain”
“Order a urinalysis or 5-ASA use (yearly, last 6/15/14)”
“Due or dysplasia screening colonoscopy I possible,
schedule when disease is inactive”
Senior in high school – schedule social work appointment

Feedback
0
1
2
3
4
5
6
7
8
9
10
Yes No
NumberofResponses
Response
Have you used any of the Pre-Visit Planning
recommendations made by the ICN Core Team?
0
1
2
3
4
5
6
7
8
All the time Most of the time Sometimes No
NumberofResponses
Response
Do you find the Pre-Visit Planning
recommendations helpful?
“I use the Pre-visit planning recommendations
along side my most recent IBD summary sheet
early morning of the day of clinic visits to review
what I need to accomplish during the visit. It has
been very valuable…I also appreciate that
fellows get the opportunity to see you review the
patient records and recommendations.”
“This has been a very helpful tool
to make me get my mind onto
needs for a given patient.”
“Having the comments from the
review of the ICN Core Team is
terrific because it helps ensure I
don't miss something or they point
out something that I forgot to do.”

Patient Voice in PVP
Unsuccessful attempts at using Patient portal (Patient
Gateway) to engage parents in their child’s PVP process
Sent PG message to eligible patients or their parents asking them to
reply with three things they would like to talk about at their next visit
11.5% response rate
Abandoned project due to poor response
Need to create another way to increase parent involvement
PLEASE TYPE IN CHAT BOX:
DO YOU HAVE ANY SUGGESTIONS ON HOW TO ENGAGE
PARENTS/PATIENTS IN THEIR OWN PVP PROCESS?

Pre-Visit Planning for the Patient at the
Visit
90

Impact on Remission Rate
Reached75%enrollment
Beganpre-visitplanning
PVPspredto13providers
0%
20%
40%
60%
80%
100%
2009-12(n=100)
2010-01(n=100)
2010-02(n=100)
2010-03(n=100)
2010-04(n=100)
2010-05(n=100)
2010-06(n=100)
2010-07(n=060)
2010-08(n=061)
2010-09(n=072)
2010-10(n=087)
2010-11(n=097)
2010-12(n=106)
2011-01(n=115)
2011-02(n=132)
2011-03(n=171)
2011-04(n=196)
2011-05(n=211)
2011-06(n=233)
2011-07(n=280)
2011-08(n=331)
2011-09(n=340)
2011-10(n=371)
2011-11(n=393)
2011-12(n=417)
2012-01(n=437)
2012-02(n=439)
2012-03(n=446)
2012-04(n=456)
2012-05(n=466)
2012-06(n=462)
2012-07(n=472)
2012-08(n=482)
2012-09(n=481)
2012-10(n=500)
2012-11(n=509)
2012-12(n=505)
2013-01(n=525)
2013-02(n=533)
2013-03(n=551)
2013-04(n=556)
2013-05(n=557)
2013-06(n=559)
2013-07(n=558)
2013-08(n=566)
2013-09(n=573)
2013-10(n=559)
2013-11(n=573)
2013-12(n=576)
2014-01(n=580)
2014-02(n=582)
2014-03(n=585)
2014-04(n=589)
2014-05(n=595)
2014-06(n=600)
2014-07(n=598)
2014-08(n=601)
2014-09(n=594)
2014-10(n=594)
2014-11(n=577)
2014-12(n=579)
2015-01(n=575)
2015-02(n=567)
2015-03(n=570)
2015-04(n=576)
2015-05(n=570)
2015-06(n=573)
2015-07(n=567)
2015-08(n=584)
PercentofPatientsinRemission
Month
Remission Rate
Remission Rate Mean Remission Rate Control Limits
ICNteammemberleft
ICNCoordinatorleft
ThiopurineDosingAuditProject
Started11/2012-2/2013
PVPspreadto20providers

ICN and Pre Visit Planning –
Reliability in the Network
How many centers are doing Pre-Visit
Planning?
What does Pre-Visit Planning look like at the
different centers?
92

Levels of Reliability
• Chaotic process:
• Failure in greater than 20% of opportunities
• Level 1: (10-1) 80-90% Reliability
• 1-2 failures out of 10 opportunities
• Level 2: (10-2) ~ 95% Reliability
• <5 failures out of 100 opportunities
• Level 3: (10-3) ~ 99% Reliability
• <5 failures out of 1000 opportunities
93

Pre-Work Survey Results
81% (n=85) eligible centers* responded to the
survey
80% (n=69) of respondents are using some
form of PVP
94

Pre-Visit Planning Survey of ICN
Is there a PVP process owner? 74%
Does PVP consist of a multi-disciplinary team
reviewing patients together? 41%
Does PVP include health maintenance
recommendations? 49%
Does PVP include patients and parents? 6%
95

Call to Action
Each center to review survey responses – treat
the survey as a checklist for implementation
Use the checklist to implement PVP
Assess barriers to change
Deprioritize other activities
Test, remove barriers and implement on a weekly
basis
Report monthly to ICN
Just do it!
96

Call to Action for Parents/Patients
Do you know what your center’s PVP process
is?
How can parents/patients best partner in the
PVP process?
97

Conclusions
Pre-Visit planning is feasible, even at a large center
Up to date information is really important
Most providers appreciate the feedback/recommendations
ICN can provide tools to help teams set up a Pre-Visit planning
process
There is variation in the interventions different teams employ
to accomplish PVP
The use of Quality Improvement tools (Model for
Improvement/ PDSA cycles) can decrease the variation and
increase remission rate.

A Video Link for Further Learning
About One Center’s Process
99

Scavenger hunt #2
Type the name of one interesting tool or
document that you find in the chat box
(hint=“tools”)
Go!

Discovering new
knowledge together via
research.

103
From Idea to Dissemination: What
Does it Mean to Co-Produce
Research in ImproveCareNow?
5:35-6:00 pm EST

Investigators and Parents
Co-Producing Research
David Alain Wohl
ICN Parent - The University of North Carolina
Lead, Research Subcommittee of ICN Parent Working Group
Idea Dissemination

What do we mean by co-production?
http://theedge.nhsiq.nhs.uk/peoplestransformathon/

Research Co-Production
Traditional Model
Researchers:
Propose hypotheses
Design study
Lead study
Disseminate findings

Research Co-Production
A New Model
Researchers and
Parents/Patients:
Propose hypotheses
Design study
Lead study
Disseminate findings

A New Model – Co-Production
More than ‘involvement’ or ‘engagement’
Active agents, not merely recipients of services
Knowledge and experience valued on par with
that of researchers
All recognize that they can achieve more together
then apart
Participation transforms how research is designed
and delivered
Co-production of research is supported and
encouraged by network
111

Why Co-Production?
Increases relevance of the research to the
affected populations
Provides alternative perspectives
Development of informed and feasibile
recruitment and retention plans
Troubleshoot thorny issues
Offers novel dissemination channels
Strengthens relationships between research
and patient communities
112

Creating Research Co-Production
Infrastructure
Creating a culture that supports and, in time,
expects, co-production
Facilitating co-production opportunities
Mitigation of challenges
Intimidation
Trust
Willingness to hear what you do not want to hear
Research ‘literacy’

New Works Concept Proposal
116

Engage with
Parents/Patients >
Research Resources
Sample Research Resources Page

Clinical Outcomes of Methotrexate Binary treatment with
INfliximab or adalimumab in practicE:
Overview and Early Reflections
6:00-6:20 pm EST

A tremendous opportunity
To change the practice of medicine in pediatric Crohn’s
disease
By addressing one of the most pressing clinical questions
To change the way we conduct research in pediatric
IBD (and perhaps other pediatric conditions)
Demonstrate the potential of ImproveCareNow, as a
prototype learning healthcare system, to implement a
randomized clinical trial
As an outgrowth of clinical care
Repurposing and expanding current organizational
structure, data collection, and other practices
Logical and inevitable next step in the ICN evolution

A Pressing Clinical Question
Anti-TNF is the most effective treatment for
pediatric Crohn’s disease
Don’t work or every patient
Don’t work orever
Real safety concerns
Can combination therapy with a 2nd immune
suppressant improve response rate and
prolong duration of response?
With acceptable level of side effects

Unanswered questions
Does addition of oral methotrexate to anti-TNF
improve outcomes (and reduce ab production) in
kids with Crohn’s?
What is the cost of this (in terms of side effects)?
Is combo with MTX equally effective (or
necessary) for Inflx and ADA?
ADA reported to be less immunogenic
Is combo with MTX equally effective (or
necessary) if we use TDM to guide anti-TNF
dose/interval?

COMBINE
Pragmatic clinical trial to compare the effectiveness and safety of
anti-TNF monotherapy versus combination therapy with low
dose, oral methotrexate in children with Crohn’s disease
126
R
Low Dose MTX
Placebo
Week 104
Primary
• Induction and
maintenance of
remission
Secondary
• PRO
• Anti-TNF and
Antibody
• Safety
Data Collection
• Age < 21 years
• Diagnosed with
CD
• Starting on anti-
TNF biologic
• No
contraindication
to MTX

Aims
To determine whether, in children with Crohn’s disease initiating
anti-TNF biological therapy with infliximab or adalimumab,
combination therapy with low-dose oral methotrexate:
1) is more effective than placebo in the induction and
subsequent maintenance of steroid-free remission for a
treatment period of up to two years,
2) leads to better Patient Reported Outcomes,
3) and leads to reduced anti-TNF antibody formation resulting in
higher anti-TNF trough levels.
and
4) To describe the investigator-reported adverse events in both
treatment arms.

Pragmatic Trial: Optimizing CER
Traditional Trial
• Focused on the drug and
evaluating its biological
activity
• Design optimized to
demonstrate maximum
efficacy
• Can the intervention work
under ideal circumstances?
Pragmatic Trial
• Focused on treatment
decisions
• Design optimized to evaluate
effectiveness when used in
everyday clinical care
• Does the intervention benefit
under usual circumstances ?

COMBINE
Was designed in response to the highest priority
research topic in pediatric IBD
Utilizes rigorous methodology to provide a
definitive answer that patients, parents, and
clinicians can trust
Will be the largest clinical trial ever done in
pediatric Crohn’s disease
First ImproveCareNow clinical trial
Entirely co-produced by parents, patients,
researchers, and clinicians

Parent/Patient Co-Production
Parents and Patients have been involved at every step:
Parents are members of the study team and provide
critical input into all aspects of study design and
execution
Parents lead the COMBINE Engagement Team which
also includes kids living with IBD (PAC)
Parents lead the development of all
recruitment/educational materials
At each participating site, we will need parent and
Patient champions who will help make the study
happen
Participating families will be a resource for families
considering enrolling into the trial

Progress
39 ICN sites participating
May have room for a few more
Contact Michael Kappelman if interested
20 Sites actively recruiting
Current enrollment: 36 participants
We still need 290 more!

Combine Sites
Active sites
UNC
CCHMC
Boston
Nemours W
Nemours J
Wash U
Riley
VA Specialists
Nationwide
seattle
CHOP
Vermont
Levine
Mercy
Wisconsin
Denver
Mt. Sinai
Michigan
Stanford
MGH
Sites awaiting activation
CHOA
Mayo
Rainbow
Alabama
CHKD
Cardinal Glennon
Iowa
Boys Town
Dayton
Dell Children’s
Montefiore
Nemours Orlando
Oklahoma
Phoenix
Yale
Lurie
Rady
Golisano/SUNY
Nebraska/Omaha
132

Get involved!
ICN Center
Thanks to participating centers
Recruit as fast as possible so we can answer this
important question in a timely manner
Patient/Parent
At each participating site, we will need parent and
Patient champions who will help make the study
happen
Participating families will be a resource for families
considering enrolling into the trial
Contact David Wohl if you want to learn how to be
more involved

Study Website:
https://combinetrial.org/

136
The PRODUCE Study: What is an N
of 1 Experiment?
6:20-6:35 pm EST

Personalized Research on Diet in
Ulcerative Colitis and Crohn’s Disease

Meet the Research Team
138
Heather Kaplan, MD, MSCE
Co-principal Investigator
Lisa Opipari-Arrigan, PhD
Co-principal Investigator
Shehzad Saeed, MD
Co-investigator (ICN Engagement)
David Suskind, MD
Co-investigator (SCD Expert)
Peter Margolis, MD, PhD
Co-Investigator
Kimberly Braly, RD
Lead Study Dietitian

Meet the Research Team
139
Giselle Woodward
Parent Stakeholder
Sheri Pilley
Parent Stakeholder
Julie Stone
Parent Stakeholder
Alex Jofriet
Patient Stakeholder
Sunny Thakkar
Study Project Manager

What is the PRODUCE Study?
• The PRODUCE study will examine how
nutrition impacts symptoms and
inflammation in pediatric patients
with IBD. It will ask whether a
wholesome diet - the Specific
Carbohydrate Diet (SCD) - can be used
as a treatment therapy.
• Developed in collaboration with the
patients, parents, and clinicians in the
ICN Network.

Why is the PRODUCE Study
Important?
• The role of nutritional interventions in
IBD therapy is one of the most
frequently asked questions from
patients and families. There is
growing evidence to show diet has an
impact on disease activity for patients
with IBD. Large multi-center studies
are needed to learn more.

What is the Goal of the Study?
The study will compare the
effectiveness of a strict Specific
Carbohydrate Diet (SCD) versus a
modified Specific Carbohydrate Diet in
reducing symptoms of IBD using an N-
of-1 study design.

What is SCD?
• The Specific Carbohydrate Diet is a
nutritionally balanced diet that
focuses on natural nutrient rich foods
including vegetables, fruits, meats,
eggs, legumes/beans, nuts and nut
flours.
• It removes grains, processed foods,
dairy (except for specific aged cheeses
and fermented yogurts), and sugars

What is an N-of-1 Design?
• The N-of-1 trial is the most patient-
centered research design available.
• The N-of-1 trials’ goal is to determine the
best intervention for an individual patient
using data and a rigorous approach.
• Results from a single N-of-1 trial only apply
to the participating patient, but multiple N-
of-1 trials can be combined to estimate
overall group treatment effect

Why use an N-of-1 Design?
• Traditional research approaches do not
provide answers for individual patients.
• Need to shi t rom the “one size its all”
approach to one that enables personalized
decision-making for each patient

• 120 patients with diagnosis of IBD
ages 7-17 years old
• Enrollment period: July 2017-
January 2019
Enrollment

• Alternate between two different study diets
over 34 weeks.
What Will Happen in the Study?
Diet
A
Diet
B
Diet
A
Diet
B
Usual
Diet

• Use a mobile app to record daily
symptom data & collect stool to
measure fecal calprotectin.
• At the end of the study, receive a
personalized result about the
impact of the diets on IBD
symptoms.
• All of the individual N-of-1 studies
will also be combined to learn
about the effects of diet in IBD
What Will Happen in the Study?

PRODUCE Study Parent Partner
Experience
Giselle Woodward
Parent Stakeholder
Sheri Pilley
Parent Stakeholder
Julie Stone
Parent Stakeholder
Alex Jofriet
Patient Stakeholder

Parent Working Group: Professional
Experience
Nurse
Camp director
ELECTRICAL ENGINEER
WRITER AND EDITOR
Realtor
Foundation director
OPERATIONS SPECIALIST
Statistician

Clinician = Care Giver
Patient = Care Receiver
Everyone = Care Improver

A Growing & Dynamic Portfolio of
Parent & Patient Driven Projects

156
The ImproveCareNow Patient
Advisory Council: Growing Up,
Improving, and Leading with IBD
6:35-7:05 pm EST

Working For and With You
to Improve Care Now
ImproveCareNow Patient Advisory Council

Goal o today’s session
1. To illustrate that PAC is a valuable resource
unique to ImproveCareNow
2. To convince you that it is an asset that you
should be leveraging in your centers OR
joining as a patient!
158

What is PAC?
According to improvecarenow.org
The Patient Advisory Council (PAC) is a group of young (14
years and up), passionate and motivated patients with IBD.
Together, the PAC is a voice for all patients that receive
care at an ImproveCareNow Center.
They contribute to research studies and the development
of health care innovations;
They share valuable experiences with healthcare
professionals, researchers and others;
They raise awareness of IBD and ImproveCareNow via
social media like LOOP, Twitter and Instagram!
159

PAC Model
161
Patient
Centered
Outcomes
Strategy
Structure
ProcessPeople
Rewards
• How we do it – we
have a model to ensure
our group is viable
• This allows us to look
at our program and
ensure we have all the
components
• It allows us to measure
our success and ensure
sustainability
• Based on the Galbraith
Star Business Model

Strategy
162
Patient
Centered
Outcomes
Strategy
Structure
ProcessPeople
Rewards

Strategy
163
Patient
Centered
Outcomes
Strategy
Structure
ProcessPeople
Rewards
• Alignment with ICN
• Common Vision:
• Be the voice for the
29,000 patients in
the network
• Build tools and
resources for
centers and patients
• Share experiences
• Raise awareness of
IBD and of ICN

Measuring Strategic Success
164
Quarterly Task Force Evaluations
• Strategic success is measured
quarterly via survey monkey
• April 2017
• Initial survey was sent
out
• Results were positive
• We learned some things we
need to work on, but that’s
what it takes to improve

Structure
165
Patient
Centered
Outcomes
Strategy
Structure
ProcessPeople
Rewards

How the PAC is Structured
Co-Chairs
Alex Jofriet
Bianca Siedlaczek
Task Force Chairs
Communications
Natalie Beck
Christian Lawson
Advocacy
Christian Hanson
Missy O’Doherty
Recruitment
Tyler Moon
Becky Woolf
Innovation Committee
Cat Berenblum - Chair
Sarah Bivona
Grady Stewart
PWG Liaison
Becky Woolf
ICN Staff Liaison
Michelle Spotts
167

Structure
168
• Task Forces allow each
member to maximize their
strengths and work
toward a common PAC
goal
• Without leadership and
formalized structure, we
are a bunch of young
people who like pizza
Patient
Centered
Outcomes
Strategy
Structure
ProcessPeople
Rewards

Process
169
Patient
Centered
Outcomes
Strategy
Structure
ProcessPeople
Rewards

Examples of Process
170
New Toolkit Creation Process
• Operating System
• Monthly meetings
• Meeting Minutes
• Leadership Meetings
• PAC is developing core
processes
• Onboarding
• Innovation

People
172
Patient
Centered
Outcomes
Strategy
Structure
ProcessPeople
Rewards

Examples of People
173
• Member Engagement
and Retention
• Building relationships
• Developing a sense of
community for support
and collaboration

Rewards
175
Patient
Centered
Outcomes
Strategy
Structure
ProcessPeople
Rewards

Examples of Rewards
176
Member Highlight

Medication Toolkit
The medication
toolkit is a 120 page
comprehensive
guide to IBD
medications written
in the patient
perspective.
The guide addresses
common patient
questions:
How does the med
make me feel
Does it hurt to take
the medication
180

IBD Storybook
The IBD storybook is
a booklet of
frequently asked IBD
questions answered
by PAC members.
Questions covered:
Relaxation
How does the
disease make you
feel
Toolkit answers all
came via a group
texting app.
181

Percent of Centers With PAC Members
183
14% 25%

184
Contact us:
pac@improvecarenow.org

The ImproveCareNow Parent
Working Group: Partnering to
Improve Care for the Pediatric IBD
Community
7:05-7:35 pm EST

Presenters
Justin Vandergrift, past leader of Parent
Working Group
Julia Ament-Cox, leader Parent Working Group
186

Agenda
History of the Parent Working Group
Formation and Organization
What we do
How we can help you
How to get involved
187

History of the Parent Group
188
ImproveCareNow has been inviting parents to
conferences for six years
Parents attended the conference with their
care center to learn about advances in IBD
care
Parents are encouraged to be part o the ‘care
team’ when they return home – which means
helping their center solve issues around care

Formation
189
The Parent Working Group is set up in a committee
structure
At the top there is a:
Past Parent Leader
Current Parent Leader
Assistant Parent Leader
There is a three year commitment for leadership roles
We have the following committees:
Membership
Communications
Research
Conference Planning

Committee Roles
190
Communications
Responsible for sending a monthly newsletter to all parent
members which highlights parent/care center innovations
Conference Planning
Prepares the agenda for parents at the spring and fall
conferences
Membership
Helps parents become acclimated to the network and
helps to integrate parents into the parent group
Research
Meets quarterly to discuss new research ideas within the
network and how the parent group can help participate in
research opportunities

What we do
191
Our goal is the support the network by
offering parent assistance and help to network
projects
Requests from the network for help are
growing
At this Spring’s con erence we organized, lead
and ran three simultaneous presentations on
how parents are providing value at their local
care centers

Co-Production
192
The end result of parent engagement is called
co-production
Co-production is where parents, patients and
clinicians work together to solve problems in
health care
What follows are three examples of co-
production which were lead and inspired by
parents

Buzzy or Shots and Riley Children’s
Hospital
Problem: Child anxiety from medications given as
injections
A mother rom Riley Children’s Hospital used a product
that caused sensory con usion It lessened her child’s
anxiety.
She wrote a grant and received funding to provide
these to all children at Riley who receive injections.
She made information available to the ICN Parent
Working Group and the solution was scaled to other
care centers, quickly and efficiently
The Parent Working Group is exploring what it would
take to provide these devices to ICN system wide.
193

Pill Cases and Levine Children’s
Hospital
Problem: Children not being tapered off Prednisone
effectively
Parents could not follow a prednisone taper schedule
Prednisone is a steroid sometimes used to treat IBD.
Sustained use creates substantial problems for the
child.
The Levine parent group provided pill cases to the
center.
The pill case is pre-loaded with the taper sequence
before the child leaves the clinic.
194

Educational Videos in Spanish
Problem: Distribution o educational material’s to
Hispanic patients
Observed a Hispanic family come to clinic
The hospital provided a translator for the family during
the appointment
All literature from the appointment was in English and
thrown into the trash as the family left
We were shooting a series of educational videos in the
clinic
Watched during the moments before the doctor comes
into the room
Varying topics related to IBD
195

Educational Videos in Spanish cont.
We shot a film with Maria, a 17 year old girl with
IBD who spoke Spanish
Her father was very interested
I asked if he would participate and he agreed
Unprompted he asked questions relating to IBD
rom a parent’s perspective
The video is available for anyone to watch or use
on YouTube
He took ownership on the spot and made a
difference
196

How we can help other parents
It is sometimes frightening to care for a child
with IBD
There is often someone else who has gone
through exactly what you are going through
We ‘steepen’ the learning curve – IE we can
help you find solutions quicker from other
parents who have dealt with your same issues
We provide a nationwide resource of parents
who can quickly offer suggestions to common
IBD issues
197

Parent Resources
We offer four parent resources:
ICNParents.com: A website with quick links on
common parent issues
Monthly newsletter: Our newsletter will keep you
informed with current parent lead innovations
happening in the network (see ICNParents.com to
sign up)
SmartPatients: A message board with other
engaged parents from around the country
Monthly calls: We meet monthly via a webinar to
cover various topics important to IBD parents
198

How to get involved
Sign up at ICNParents.com
parents@improvecarenow.org with your email
address and name will sign you up for our
monthly webinars
199

Parent and Patient Innovation!

Getting Involved and Finding Your Place
in ImproveCareNow: So Many Ways to
Participate!
2017:35-8:00 pm EST

• It’s all right here on the
homepage!
• Care Centers
• Tools
• Social Media
• Network Hub (portal,
exchange, registry)
• Events & Opportunities
(more to come!)
• Sign up for CIRCLE right on
the homepage!
ImproveCareNow.org

• The official blog of
ImproveCareNow and home of
#myICN stories – LOOP - is
integrated into our website,
making it super easy to read
and share stories.
• Sign up to follow LOOP and
receive new posts in your inbox
• Comment using Disqus
• www.improvecarenow.org/loop
LOOP

Scavenger hunt #3
Type the title of one interesting-looking LOOP
blog post in the chat box (hint=“get involved”)
Go!

• Find and connect with the
people & opportunities that
matter most to you!
• Join our CIRCLE and connect with
the PAC & PWG
• Submit a story to share on the
LOOP blog
• Researchers are invited
to submit a proposal to the
Research Committee
www.improvecarenow.org/get_involved
Get Involved

Other Resources
• ImproveCareNow Current Research
– Keep up to date with a listing of current research (includes links to resources)
– www.improvecarenow.org/current_research
• ImproveCareNow Quality Improvement Projects
– Keep up to date with a listing of quality improvement projects (includes links to resources)
– http://www.improvecarenow.org/quality_improvement_projects
• Care Centers (Interactive Map)
– locate, learn more about & connect with ICN Centers
– www.improvecarenow.org/care-centers
• Tools
– A library of co-produced IBD tools to improve care for kids with IBD, including: Smart Patients
sign up, Ostomy Toolkit, Self-Management Handbook, and more
– www.improvecarenow.org/tools
• Our Success Infographic & Control Charts
– www.improvecarenow.org/purpose-success/#success
– www.improvecarenow.org/purpose-success/#control-charts

Please respond to the survey you
receive tomorrow!
Tell us how we can improve these
learning opportunities!

Thank you for helping us build more of this!

Questions?
http://www.improvecarenow.org/contact-us

ImproveCareNow Virtual Community Conference Spring 2017

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