coiin News Articles

NCCA Blog – “Bringing families to the center and empowering them to lead their child’s care:” Team Texas’s Vision for Transforming the Complex Care System

Wednesday, June 15, 2022

Team Texas participated in the National Care Coordination Academy (NCCA) to continue the family-centered care coordination work they started as part of the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (CMC CoIIN). According to Ivy Goldstein, State CSHCN Health Coordinator and CMC CoIIN Program Lead, and Rahel Berhane, MD, Medical Director of the Children’s Comprehensive Care Program, the NCCA has allowed Team Texas to further refine their care strategies and explore family-centered outcome measurement.

“We were exposed to a variety of standardized, validated measures as part of the NCCA. We felt that there was a void in these measures in terms of really, truly getting a sense of the parent experience of interactions with the care team, so we engaged our family work group in coming up with questions that would truly measure their experience,” Dr. Berhane said.

As the team has started to pre-test this new survey, they have continued to engage family representatives each step of the way. Dr. Berhane described the iteration process for the outcome measure as “driven by the parents who put it together.”

Another of Texas’s innovations is a mobile device app where families can access their Shared Plan of Care (SPoC). During the first years of the CMC CoIIN, the team developed the application and created “modules” within it that lay out the care plan for a child depending on how they are feeling that day. Care instructions, including medications, for a well day are highlighted in green, sick day plans are highlighted in yellow, and crisis instructions are highlighted in red. All of this information is entered into the electronic medical record by the provider and is automatically pushed to the app, where it is available anytime at the caregivers’ fingertips.

Collaboration with families during the NCCA led to the development of another app module, called Action Items. Goldstein explains that caregivers requested the addition of this section to help keep track of what needs to be done before their next appointment. Action items for both the family and providers are included in this section, each with due dates. Checking this list at regular intervals ensures that the clinic staff has “closed the loop” on all open action items. For example, an action item of referral to a specialist is not complete until the clinic team has verified that the patient had an appointment with that specialist and has received the specialist’s notes.

A main goal for Team Texas has been to increase care integration across all of a child’s providers. To explain care integration, Dr. Berhane said that a primary care provider sending a referral to a specialist and receiving feedback from that specialist in the form of a letter would constitute a low level of integration, whereas if the two providers engaged in a case review together, that would be a higher level of integration. The strongest care integration would be the two providers joining the patient visit together, potentially through telemedicine. Although achieving strong care integration can be difficult due to current payment models, Team Texas is exploring ways to transform the system and make their integrated care vision a reality.

“What we have suggested is that we would have twice-a-year visits, quarterbacked by the primary care provider in collaboration with the parent. Not only will the specialists that contribute to the care plan will be invited, but also there would be a lot of pre-visit preparation with the family and the nurse case manager using the app to document their goals and what they are seeking to achieve in the coming six months. We’re calling it a whole child visit instead of the well-child visit. This naming was suggested by a parent who wanted us to emphasize that the children may not be well in the traditional definition, but the visit’s comprehensiveness is where they want it to put the emphasis,” Dr. Berhane said.

When asked about what they were most proud of as part of the CMC CoIIN and NCCA, Goldstein and Dr. Berhane agreed that family engagement was the most important part of their work.

“The CMC CoIIN made family engagement such a priority, and that changed all of us, in our lens and our approach. Of course, the payment structure and making this sustainable financially is vital, but bringing families to the center and empowering them to lead their child’s care as integral members of the team is only going to help make the system more sustainable,” said Goldstein.

By Candace Jarzombek, CMC CoIIN Graduate Research Fellow