Volume 02 | September 27, 2018
CMC CoIIN State Teams
Monthly e-Newsletter
WELCOME back to the 2nd installment of the
monthly CoIIN State Teams e-Newsletter!

In order to support each state team and promote cross-team sharing, we will cull timely and relevant topics, tips, and news to assist you in developing, implementing, and evaluating meaningful QI projects to advance care for children with medical complexity and their families.
1.     Family Engagement Spotlight:
a) Family Engagement Across the CMC CoIIN: A Snapshot Look at What Other States are Doing, by Cara Coleman, Family Voices National
b) Family Engagement - Salient Resources & Articles
2.     What's New?: Relevant updates on every aspect of the CMC CoIIN
a.     Measurement Matters: Special Zoom Session to Review Final QI Measures for CMC CoIIN
b.     Overall Project Evaluation: Making Progress on Medicaid Data Requests
c.     QI Tools You Can Use: Expanding on the 8 Wastes, by the IP team
d.     National Advisory Committee: Year 2 Virtual Meeting Schedule Set
3.     State Team Corner
Family Engagement Activities Monthly State Team Updates
(plus bonus updates!)
NOTE: Also check out relevant resources under "In Other News"
4.     FAQs
5.     In Other News...
6.     Notable Dates and Deadlines - 2018
7. Give Us Feedback 

We are exploring ways to balance breadth and depth of content with brevity. So, here you will see "teasers" under each topic area outlined above. Click "Read More" under any topic to link directly to a companion online document containing the full e-newsletter.
Thoughts? Click the "Give Us Feedback" button
(end of e-newsletter).
Family Engagement Spotlight
Family Engagement Across the CMC CoIIN:
A Snapshot Look at What Other States are Doing

by Cara Coleman, Family Voices National
Year One of the CMC CoIIN is officially in the books. Done and three more to go! Universal to the first year is the amount of time that each state spent forming a team, getting to know each other and making a plan. As we begin the second year, we thought it would be great to do some sharing and getting to know each other across state lines/ state teams through the lens of families… what is going on in terms of family engagement in other states?
Three themes emerge this month as to states’ reports of how they operationalize some of their meaty plans for family engagement: ...
Family Engagement - Salient Resources & Articles
(click on each title below to access)
by the Institute for Healthcare Improvement

This Starter Kit is specifically designed to help parents of seriously ill children who want guidance about “having the conversation” with their children. Available in Chinese, English & Spanish.

Parents are their children’s best advocates. They’re also those who navigate the systems we seek to improve. When we empower parents to partner with us, we can best understand their needs and respond with practical and powerful solutions. Nicole Hopkins, a New Jersey team lead for the NICHQ-led Early Childhood Comprehensive Systems Collaborative Improvement and Innovation Network ( ECCS CoIIN ), knows firsthand just how effective parent voices can be.

Palliative (pal-lee-uh-tiv) care is comprehensive treatment of the discomfort, symptoms and stress of serious illness. The National Institute of Nursing Research (NINR), developed the Palliative Care: Conversations Matter  ®  campaign to increase the use of palliative care for children and teens living with serious illnesses
Does your team have innovative ideas, tools and/or strategies for family engagement that you would like to see featured in future issues?
Click the “Give Us Feedback” button below.
What's New?
Here you will find relevant updates
on every aspect of the CMC CoIIN

Measurement Matters
Special Zoom Session to
Review Final QI Measures for CMC CoIIN
When : Thursday, October 4, 2018, 2-3p EST
Led by : Meg Comeau (BU) and Greg Randolph (PHIP)
For : All state team leads and other interested team members, and
interested collaborative partners

**After registering, you will receive a confirmation email containing information about joining the meeting.**

a)  This session will be recorded for those who cannot attend.
b) OPEN OFFICE HOURS w/ Meg: Tuesday, 10/9/18, 3-5p ET
(Outlook invite to follow)
**As needed, please email Meg to schedule a separate meeting time**

It's arrived! The final list of CMC CoIIN overall project Quality Improvement measures that all states will collect is finally here! The measures are derived directly from the overall goals of the CMC CoIIN: Improving child quality of life, family well-being and cost-effectiveness of care through meaningful family engagement. They were developed through an in-depth collaborative process led by the Measurement Workgroup, which was open to all state team members, with review and input by the National Advisory Committee, family leaders, state team representatives and our partners at HRSA ...

Overall Project Evaluation
Making progress in Medicaid data pull requests
The Evaluation Committee is developing and operationalizing the overall project evaluation plan, most notably right now in relation to higher-level data such as Medicaid state-level data. Steve Fitton is working with each state to identify a high-level Medicaid contact. As expected, teams are at different stages in this connecting process, in part depending on degree of past interactions/collaborations with Medicaid.

Steve Fitton will broker the "ask" of each state's Medicaid office, based on set parameters that the Evaluation Committee met three times in the last month to (nearly) finalize ...

QI Tools You Can Use:
Expanding on the 8 Wastes

by the Population Health
Improvement Partners (IP) Team

Below is more in-depth information from the CMC CoIIN State Team Webinar #4: Observational Walks & In-Person Prep held on Sept 17, 2018 (see recording here ). Below, the IP Team provides further insight into identifying the 8 wastes to make your Observational Walks optimally useful to you.
Optimizing value through your gemba (aka Observational Walks)
Like we mentioned on the webinar, we want to spend more time providing value to our patients and families and less time performing non-value added activities

Often times, we focus on optimizing value-added activities, but neglect to eliminate and reduce non-value added activities. When you’re at your gemba, don’t forget to be on the lookout for waste (or “muda”).

There are 8 common types of waste which can be remembered using the acronym DOWNTIME. You may find it helpful to print the below table and bring it with you to your gemba ...

National Advisory Committee
Year 2 Schedule Set for NAC members virtual meetings!
NAC members - mark your calendars
Thursday, November 15, 2018, 1p-4p ET

Thursday, February 7, 2019 2p-5p ET

Thursday, May 2, 2019, 1p-4p ET

**The annual in-person meeting date is TBD, and
will occur sometime around August 2019**
S tate Team Corner
The latest and greatest from you for you!
Here, we feature each state team's family engagement activities from the monthly state team updates to foster ideas and cross-sharing in this fundamental area. Feel free to talk to your coach or reach out to individual state teams if anything here grabs you.

We also feature the additional updates from 4 states who offered, in the spirit of QI, to share other sections of their updates - a BIG thanks to you!!

ALSO: Please see "In Other News" below for some very relevant resources, including a new publication by lead author Jeannie McAllister (CMC CoIIN NAC member) providing an example of what a SPoC that incorporates true family partnership can achieve in “real life” practice. 
We GOT this!
What do we need to do ahead of the in-person meeting?
We are very excited for the 2nd in-person meeting, whether you are attending in-person or virtually! First, thank you to all in-person attendees for booking your travel through AAP! If you have any other travel-related questions/concerns, please contact our excellent colleague Beth Mloduch at the AAP: bmloduch@aap.org

In preparation, here's what you need to do:
1) Conduct team "gemba" (observational walk) and bring your observations to the meeting (see QI Tools You Can Use section above, w/ related webinar link)
2) Create your team's storyboard (see separate FAQ in this section)
IMPORTANT NOTE: Someone will want to arrive early to the kickoff to assemble your storyboard
3) Team leaders are providing team's top 3 successes, challenges, and in-person meeting goals in the September state team update
4) Come ready to share and learn from each other in both the successes and the challenges!

This may require some additional team meeting time in whatever way works for your team.
What do we need to do for the team storyboard for the in-person meeting and why?
Answer provided by the IP Team:
What’s Your Story?
The in-person kickoff dinner on Sunday night will provide an in-depth and focused opportunity for cross-team sharing and learning. Please create a storyboard to effectively present your team’s story descriptively, clearly, and creatively, including areas you would most like feedback from state teams, and top successes to share with your peers. To foster a free flow exchange of ideas and feedback, designees will stand with their storyboard while their team members engage with other teams around salient and relevant interests and needs to move their projects forward. In addition, we will be displaying the storyboards at our training space at the AAP throughout the in-person meeting.  At both locations, each storyboard station will have post-it’s to write down quick praise/questions/ideas/related resources among the teams. ...

When will the BU IRB be ready?
The IRB protocol has been reviewed and we expect approval shortly.
And good news! There were no changes requested to the content of the protocol. This means that the draft protocol we shared in last month's e-Newsletter is the template to use (click orange button below to view).

Now that the QI measures have been finalized, each state team should have all they need to move forward with drafting their own IRB protocols. We will provide the final approval letter and related materials ASAP to submit with your IRB protocols.

We are here to help! Please email Meg or Bethlyn w ith any questions.
What do I need to do again for Year 1 carryover requests?
Meg just sent a reminder email with instructions o n 9/14/18 to state team and collaborative partner leads and financial contacts, including relevant attachments.

The instructions and attachments are also posted here.
Can we streamline communication for the CMC CoIIN? There's A LOT going on!!
Absolutely! We hear ya! We are talking about the best way to accomplish this, which will likely involve the newsletter and our shared online workspace at Box.com, where all materials will "live" for everyone to access.

Bethlyn has begun providing access to some project materials, primarily for team leads, via Box. The final rollout to all CMC CoIIN participants will occur after a brief introduction to Box at the in-person meeting in October. At that time, we will also share our streamlined communication strategy. Thanks for your patience as we work through our own PDSA cycle (-:
In Other News...
Lucille Packard Foundation - A Conversation on Ethical Considerations for a Fair and Effective Health Care System
October 24, 2018 10-11a PT
Developing Population Health Measures for Children with Medical Complexity
Children with medical complexity (CMC) account for about 40 percent of pediatric Medicaid spending, yet comprise only 3 percent of the pediatric population. The diversity of these children's conditions, and their variable severity, means that it has not been possible to reliably describe the overall health of the CMC population. A new study reports on efforts to identify a set of health domains that could be used to guide measurement of the health of this heterogenous group.

Jeanie McAllister is a member of the NAC. This could be really helpful to the CMC CoIIN state teams in providing an example of what a SPoC that incorporates true family partnership can achieve in “real life” practice:

McAllister, JW , Keehn, RM, Rodgers, R, Lock, TM (2018). Care Coordination Using a Shared Plan of Care Approach: From Model to Practice. Journal of Pediatric Nursing , 43 (Nov/Dec): 88-96
Ryan Coller is a member of the NAC and the WI State Team:

Barnert ES, Coller RJ , Nelson BB, Thompson LR, Klitzner TS, Szilagyi M, Breck AM, Chung PJ (2018). A Healthy Life for a Child With Medical Complexity: 10 Domains for Conceptualizing Health . Pediatrics, Published Online August 17, 2018; doi: 10.1542/peds.2018-0779

This work was kindly funded by the Lucile Packard Foundation for Children’s Health, and Dr. Edward Schor (also on our NAC) 
Back to the Basics: Tips to Understand and Implement the Medical Home Model

From the National Center for Medical Home Implementation
Digital Health Products for Complex Populations Disparities

Today, few digital health products are developed to support individuals with complex physical, behavioral, and social needs. This database of digital health products, developed by the Center for Health Care Strategies through support from Kaiser Permanente Community Health, is intended to help health care providers, payers, and other stakeholders identify tools . ..
Know of any interesting events or other resources to share? Let us know at the "Give Us Feedback" button below (-:

You can always email Bethlyn too: bvergo@bu.edu
Notable Dates and Deadlines - 2018
Friday, September 28th
Monthly State Team Update Form due
(last Friday of each month)

Thursday, October 4th, 2-3p ET
Special Webinar:
CMC CoIIN Final QI Measures
See Measurement Matters above for more details and to register and/or see Outlook invite from Bethlyn

 Tuesday, October 9th, 3-5p ET
Open Office Hours w/ Meg
(Outlook invite to follow)
NOTE: Open office hours w/ Meg moving forward will be the first Tuesday of the month from 4-5p ET
( Recurring Outlook invite to follow)
Be sure to schedule ample team time for state team in-person meeting prep work first presented in the Sept. webinar.

Sunday October 28th
State Team In-person Kickoff Event
~4p-7p CDT, Chicago Westin Hotel

Mon/Tues, October 29th/30th
State Team In-person Meeting
Chicago AAP Headquarters
~8:30a-4:30p CDT
NOTE: Early end on 8/30 - more soon

Thursday, November 29th
Bimonthly State Team Webinar #5
1:30p-3p EDT
Topic: TBA
Just for Fun (-:
"The best way to make the world a better place is to show 'em how it's done."
What else would you like to see here?
Click the button to give us your ideas!
CoIIN to Advance Care for Children with Medical Complexity | Center for Innovation in Social Work and Health | Boston University School of Social Work | 302-329-9261 | mcomeau@bu.edu| http://cahpp.org/project/CoIIN-CMC