Tuesday, July 09, 2024
In this family-driven interdisciplinary café-style series, funded by the Lucile Packard Foundation for Children’s Health (LPFCH) and presented by co-principal investigators (PIs) Bethlyn Houlihan and Meg Comeau of the Center for Innovation in Social Work and Health (CISWH) at BU School of Social Work, experts share perspectives on what matters most to families of children with medical complexity (CMC) to improve systems of care. The sessions are largely based on learnings from the Collaborative Improvement and Innovation Network to Advance the Care of CMC (CMC CoIIN). Cafés focus on facilitated, active group discussions for concrete strategies to advance policy, clinical practice, research, and interdisciplinary education, elevating family leader colleagues throughout. Participants’ ideas are then synthesized thematically using generative AI and distributed widely.
3/27/24 – Café #1: Where We Are Now & Where We Need to Go
In the first café, Cara Coleman, JD, MPH, The Bluebird Way Foundation, and Meg Comeau, MHA, CISWH, provided a brief overview of key topics, major frameworks, and emerging trends to advance the quality of life and well-being of CMC and their families through federal, state, and local initiatives. Bethlyn Houlihan, MSW, MPH, CISWH, took a deep dive into participants’ questions and facilitated large group discussion to garner insights into improving systems of care of CMC including actionable strategies, resources, and leverage points for change.
View the recording, slides, and related materials here.
5/29/24 – Café #2: Humanism in Clinical Care to Meet Whole Child/Family Needs
In this session, Bethlyn Houlihan, MSW, MPH, CISWH, and Dennis Kuo, MD, MHS, University of Rochester, shared current framing around what matters most to families from, “What Families of Children With Medical Complexity Say They Need: Humanism in Care Delivery Change”, focusing on strategies for humanism in practice to improve care delivery and mitigate systems-level bias. Participants then explored how to reinvigorate human-driven approaches to meet whole child/family needs in systems of care.
View the recording, slides, and related materials here.
7/24/24 – Cafe #3: Policy Opportunities
In this hour-long café, Lisa Kirsch, MPaff, senior policy director of the dean’s office at Dell Medical School, and Meg Comeau, MHA, CISWH senior project director, will share framing around the current policy landscape for CMC. Through facilitated discussion in breakouts, participants will explore and learn together where policy opportunities lie for both small and substantial changes at the local, state, and national levels. We will reconvene the group to share high-level takeaways from breakouts and ideas will be synthesized thematically using generative AI and distributed widely.
8/21/24 – Café #4: Family-Driven Approach to Understanding Family Well-Being and Its Facilitators
Jay Berry, MD, MPH, and Katie Huth, MD, MMSc, FRCPC, both of Boston Children’s Hospital, will discuss the current state of research priorities for CMC, including family-driven measurement. Participants will join breakouts where they will explore meaningful research opportunities to advance policy and practice, particularly around family well-being and novel approaches that are family-driven. The group will reconvene to share high-level takeaways from breakouts.
10/30/24– Café #5: Health Equity and Anti-Ableism Through Family Partnership
This café will be led by discussants Nikki Montgomery, MA, MEd, GPAC, Director of Strategy and Communications, Family Voices, mother of a child with medical complexity; and Michelle J. White, MD, MPH, Associate Professor of Pediatrics, Duke University School of Medicine. Discussants will first give examples of the pressing need to address bias in systems of care and move from a medical to social model of care, and key ways family colleagues’ lived expertise is essential to humanizing systems. Through facilitated discussion in breakouts, participants will explore and learn together tangible tools, strategies, and resources to effectively partner with families to make real progress in health equity and anti-ableism. We will reconvene the group briefly to share high-level takeaways from breakouts.
12/4/24 – Café #6: Sustainability and Strategic Partnerships
The final café will be led by Jeff Schiff, MD, MBA and Rich Antonelli, MD, MS, with lead facilitation by CISWH’s Meg Comeau, MHA. Based on current efforts at state, territorial, and national levels, they will share a strategic yet practical perspective for advancing sustainable care coordination and integration despite its elusive challenges. The experts will discuss the power of embracing radical incrementalism in Medicaid and emphasize the critical role that collaborative leadership with families plays in sustainability efforts. Through facilitated breakout discussions, participants will explore strategies to progress toward meaningful sustainability and strategic partnerships in systems of care.