Volume 01 | August 17, 2018
CMC CoIIN State Teams
Monthly e-Newsletter:
The Inaugural Issue!
WELCOME to the inaugural issue 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:
Best Practices from Team Texas and Team Oregon
a.     Answering Questions About Family Engagement Through a CoIIN
Lens: Formation of the Texas Family Work Group
b.     The Family Engagement Request Matching Tool 
by Tami Bakewell, Team OR
2.     What's New?: Relevant updates on every aspect of the CMC CoIIN
a.     Measurement Matters: Asking the Hard Questions
by Cara Coleman, Family Voices
b.     Overall Project Evaluation Update
c.     QI Tools You Can Use: Multi-voting
d.     National Advisory Committee Activity Updates
3.     State Team Corner
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
Best Practices from
Team Texas and Team Oregon

To start us out in our inaugural issue, a family leader from Team Texas answers your questions about family engagement and we share an innovative family engagement matching t ool from Team Oregon.
Answering Questions About Family Engagement Through a CoIIN Lens:
Formation of the Texas Family Work Group

*NOTE: The questions used to interview Texas Family Leader Sherry Santa for this piece were based on responses to a survey of state teams regarding what questions they had about family engagement prior to the July 2018 webinar.

A. Engaging family partners
A1. How do we ensure that families represent the diversity of those who receive services in the system/ our program?
      ... Texas has been looking at diversity expansively - investigating how to start a Spanish-speaking family workgroup ...

A2. What's the value of reaching out to a family-led or community based organization as opposed to engaging a single parent that we identify?
     Family-led organizations have connections with so many families ...

A3. How many family partners should we have on our team?
Always more than one - so a family partner is never alone in their voice and work. Amount can also be viewed in layers of family engagement in QI ...
B. Preparation of family partners
B1. What training or onboarding is needed by families? 
     Texas did not used formal onboarding materials but they did begin by laying ground rules, orienting families to all aspects of the Texas CoIIN project ...

B2. How will we know what accommodations families may need to engage?
     Ask them. Many worry that families will feel overwhelmed by requests to participate given their otherwise heavy loads, however, it is important ...

B3. What if families use team time as therapy or engage to “vent” rather than constructively participate?
     One key tool to guide the workgroup to work, not vent, is that Sherry acts as the facilitator in her role as family leader from Texas P2P ...

B4. What is the right/ fair reimbursement rate for family roles and how do I get money to pay them?
     Families in Texas are paid $25/hour for their role on the family workgroup. The rate was set based on the past experience/ recommendation of ...
C. Preparation of professional partners to engage with families
C1. What kinds of preparation do professionals on the team need to partner effectively with family members?
     Transparency. Texas core team members have shared their AIM statement, charter, fishbone diagram and much more with the family workgroup ...

C2. What about confidentiality if they participate in a project with a clinic where they receive care?
     Texas supports families in this situation by having Sherry as facilitator and enabling the family workgroup to meet at the clinic or off-site ...

C3. How do we know when is the right time to bring families into a project?
From the very beginning so that families, in all their roles, can see drafts, offer ideas/ lived experience and weigh-in in real time.

To learn more, please feel free to reach out to the Texas state team leads:
The Family Engagement Request Matching Tool
(Tami Bakewell, Team OR)

Our Oregon Family Involvement Program frequently gets requests from health agencies and providers ... We found that we do a much better job of recruiting and matching families to projects if we “slowed down” the process, and asked the professional entity to really think through WHY they want a parent to join them. We believe that it is vital for all parties to think through both the intention and the logistics of family involvement. 
Asking health providers and other entities to fill out the form helps clarify the logistics that can make or break a successful match ... 

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

Asking the Hard Questions
by Cara Coleman, Family Voices
The overall goals of the CMC CoIIN are three-fold: improving child quality of life, family well-being and cost-effectiveness of care. When the Measurement Work Group was reviewing quality of life and well-being items for CMC, there was thoughtful inquiry from some non-CMC family members about whether some of the items we were considering using were too harsh or might be too painful to ask families. These are important questions, and so we wanted to take some time here to share the family perspective in this regard. ...

Overall Project Evaluation
The Evaluation Committee is developing and operationalizing the overall project evaluation plan, including not only intervention measures, but also higher-level data such as Medicaid state-level data, as well as process data ...

*See FAQs below for more info on the Medicaid state-level data pull requests and what that means for your team*
QI Tools You Can Use: Multi-voting
by the IP Team

Have you ever ended your meeting with a bunch of great ideas but you know you can’t tackle them all? Then Multi-voting may be a great tool for you!
What is Multi-voting? 
Multi-voting is a quick and easy way to identify the “vital few” priorities from a large list of possibilities!
When should I use Multi-voting?
  •  After a brainstorming session
  • When you have a long list of possibilities that needs to be narrowed down
  •  When you are with a large group
  •  When you want the decision to be made by the group, not just a few
  • individuals
How do I facilitate Multi-voting? ...

National Advisory Committee Activity Updates
Most recently, the NAC Leadership Subcommittee (consisting of physicians and family leaders from the larger NAC) met via phone on 8/9/18 to discuss a replacement for the unanticipated hospitalization objective. ... Next up for the National Advisory Committee (NAC) is the annual in-person meeting being held on August 23, 2018. ...

S tate Team Corner
The latest and greatest from you for you!
Each month, we will highlight each state's family engagement activities, recognizing their centrality to the project and its success. So, from here on out, you'll want to be sure to have your family team reps fill in the family engagement section of your monthly updates or collaborate with them in writing it . ...

To start us off, we compiled each team's current aim/focus, so you can each see what others are working on here. Each state team also has its own page, accessed at the CMC CoIIN website's state teams page.

We GOT this!
When will the BU IRB be ready?
Good question! We have submitted our materials to BU. The protocol is expedited, so it should not take *too* long. We will DEFINITELY keep you posted.
Please be aware of a few things ...

When will the shared workspace be ready?
We will be using Box.com as our shared workspace for this project. Within the next few weeks, you will receive an invitation to join ...

Can you tell us more about the Medicaid state data pull?
Definitely! Here's the gist:
  • For the overall project evaluation, there is common Medicaid state-level data that BU would like to request from all states.
  • Sally Bachman has reached out to each of the state team leads ...

Any updates on the in-person meeting logistics? We need to plan!
And, is there going to be an in-person kickoff event or what?
Our collaborative partners at the AAP, Michelle Esquivel, Christina Boothby, and Beth Mlodoch, just sent out an RSVP request due back Friday, August 24, 2018, ... Several of you have asked about having more than 6 state team ... As for the kickoff event - YES, it is happening! ...

What about Year 1 carryover requests?
What about them? (j/k!) Meg just sent an email with instructions on 8/10/18 to state team and collaborative partner leads and financial contacts, including relevant attachments.

The instructions and attachments are also posted here.
In Other News...
Lucille Packard Foundation Webinar: Supporting Self-Management in Children and Adolescents with Complex Chronic Conditions
August 22, 2018 10-11a PT
HSRProj Back to School Webinar: Using Data Visualization in Translating Your Research  
August 22, 2018, 2-3p ET

Ryan Coller is a member of the NAC and the WI state team:

Barnert, E. S., Coller, R. J. , Nelson, B. B., Thompson, L. R., Chan, V., Padilla, C., Chung, P. J. (2017). Experts’ Perspectives Toward a Population Health Approach for Children with Medical Complexity. Academic Pediatrics , 17(6), 672—677
A project out of Italy related to kids who use ventilators:

Rusalen, F., Agosto, C., Brugnaro, L., & Benini, F. (2018). Impact of the Regional Pediatric Palliative Care Network on the Care of Children on Long-Term Ventilation: Could the Availability of a Residential Solution into the Network Reduce the Duration of Intensive Care Unit Staying for These Patients? Journal of Pediatric Intensive Care, 7(2), 75–80.
19th Annual Chronic Illness and Disability Conference: Transition from Pediatric to Adult-based Care
October 25-26, 2018

Registration is now open to be a broadcast site for this CME/CE activity (brochure attached). ...

PCORI-Funded Projects Aim to Use Telehealth to Address Disparities

As Americans’ use of cell phones and the internet have increased rapidly, clinicians and researchers have realized that telehealth may help people better manage their health. ...
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
Wednesday, August 1st
Start of Project Year 2!

Thursday, August 23rd
CMC CoIIN In-person National Advisory Committee meeting
Washington, DC

Friday, August 31st
Monthly State Team Update Form due
(last Friday of each month)

Monday, September 17th
Bimonthly State Team Webinar #4
12p-1:30p EDT
Topic: TBA (in process (-: )

Friday, September 28th
Monthly State Team Update Form due
(last Friday of each month)
Be sure to schedule ample team time for state team in-person meeting prep work first presented in the Sept. webinar.

NEW! 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 (-:
"Knowing that we can be loved exactly as we are gives us all the best opportunity for growing into the healthiest of people."
~Mr. Rogers
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