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Pediatrics: Lessons Learned and Future Directions for Improving Care of Children with Medical Complexity Through CISWH Project

Friday, February 02, 2024

The population of children with medical complexity (CMC) is steadily growing, and with it comes a rising awareness of the challenges faced by their families—lack of access to needed health and social services, financial hardship as the result of high expenses, and lost income and missed opportunities for improving outcomes. To address these needs, the Health Resources and Services Administration’s (HRSA) Maternal and Child Health Bureau (MCHB) funded the Center for Innovation in Social Work and Health (CISWH) at Boston University’s School of Social Work (BUSSW) to lead the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (CMC CoIIN).

In a new seven-paper journal supplement published in Pediatrics, a group of CMC CoIIN leaders lay out lessons learned over the duration of the project (2017 – 2022), its impact, and the future of its work to improve child quality of life, family well-being and cost-effectiveness of care. The first article in the supplement gives an overview of CISWH’s CMC CoIIN project.

How a Collaborative Improvement and Innovation Network (CoIIN) Works

A CoIIN brings together groups of interdisciplinary teams of families, medical providers, policy makers, and payers to form a network aimed at identifying problems, developing and applying interventions, and evaluating the impact of said interventions using evidence-based processes. The separate teams come together regularly to share findings with one another and ensure that successes are spread throughout the network.

The CMC CoIIN had three goals for the project across ten state teams:

● Improve the quality of life for CMC
● Improve the well-being of their families
● Improve the cost-effectiveness of care of CMC

Equitable, Measurable Family Partnership and Core Values as Guiding Principles

Guided by nationally-recognized family leaders, clinical and implementation science experts, state-based teams, affiliate organizations, and individual families, the CMC CoIIN held equitable, measurable family partnership as a key principle in achieving its goals. The following are examples of strategies used to operationalize this guiding principle:

● Active family leader participation, serving on the project’s National Advisory Committee and as faculty, case presenters, moderators and learners in the COVID-19 and CMC Extension for Community Healthcare Outcomes (ECHO) medical education program.
● Training, technical assistance, and financial support for family leaders participating in the CMC CoIIN provided by the CISWH-based leadership team.
● Tools, resources, peer-mentoring support and coaching for family leaders provided by Family Voices.
● Use of the new Family Engagement in Systems Assessment Tool (FESAT) to help state teams measure levels of family engagement in systems-level work, and, based on this data, develop team-driven plans to increase it.
● A family leaders’ affinity group call every 6 weeks for shared problem-solving and peer-support.
● Required monthly reporting by state teams on family engagement activities and outcomes to the CISWH-based leadership team.

The CMC CoIIN also centered its work around three core values:

Accountability: The CMC CoIIN leadership and state teams held themselves accountable to CMC and their families, ensuring that families were part of the process and empowered to share their perspectives.

Transparency: The teams held honest conversations and were open to sharing both challenges and successes across teams and hierarchies. The network was committed to building a community of trust, encouraging teams to share their disappointments and challenges, in addition to identifying any “wins” as a source of valuable learning for everyone.

Equity: In the CMC CoIIN, family leaders were treated as equals among clinicians and other team members. Family leaders themselves were required to be treated as equals with one another as well, regardless of experience, child’s age, diagnosis, or status as a paid family leader or volunteer.

What We Learned

Over five years, the CMC CoIIN made considerable progress in understanding and quantifying the challenges of families raising CMC, particularly during the COVID-19 pandemic.

While the CMC CoIIN made good progress on improving the quality of life for CMC and the well-being of their families, the network made fewer gains on improving cost effectiveness, largely because of the small number of CMC enrolled across all teams and the impacts of the pandemic—it was difficult to see meaningful change in claims and utilization data that could be directly credited to the CoIIN teams’ interventions.

As the first collaborative quality improvement network for improving the quality of life for CMC and their families, the CMC CoIIN gained valuable learnings and experience which could have implications for future improved care delivery for this growing population of children across the United States.

Learn more about topic-specific impacts of the CMC CoIIN through the January 2024 Pediatrics Supplement.