Wednesday, August 21
2:00 – 3:00 PM ET
Zoom
The fourth of six virtual cafés will be led by discussants Jay Berry, MD, MPH; Katie Huth, MD, MMSc, FRCPC; and Nikki Montgomery, MA, MEd, GPAC. In this hour-long cafe, they will briefly share framing around the current state of research priorities for children with medical complexity, including family-driven measurement. Through facilitated discussion in breakouts, participants will explore and learn together where meaningful research opportunities lie to advance policy and practice. The group will reconvene briefly to share high-level takeaways from breakouts. Ideas will then be synthesized thematically using generative AI and distributed widely. This series is funded by the Lucile Packard Foundation for Children’s Health.
View the Recording
View the presentation slides here.
Synthesis Materials:
Discussion Materials
Discussants:
Jay Berry, MD, MPH
Chief, Complex Care Services, Boston Children’s Hopsital; Associate Professor, Harvard Medical School
A general pediatrician and hospitalist, Berry’s clinical, quality improvement initiatives, health services research, and policy work have focused on optimizing health outcomes for children with medical complexity through proactive care planning, integrated health information management, and co-management with medical and surgical specialists. He is Co-Director of the Children’s Hospital Association Health Services Research Academy and the Executive Director of the Maternal and Child Health’s Children with Special Healthcare Needs Research Network. Dr. Berry has had 16 years of continuous federal research funding (NICHD, AHRQ, MCHB, NHLBI, and European Commission), which has contributed to over 200 publications, book chapters, and reports. He serves on the editorial boards of JAMA Pediatrics and Academic Pediatrics.
Kathleen Huth, MD, MMSc, FRCPC
Pediatrician, Division of General Pediatrics, Boston Children’s Hospital; Assistant Professor of Pediatrics, Harvard Medical School
Kathleen Huth, MD, MMSc, is a pediatrician in the Complex Care Service at Boston Children’s Hospital and Assistant Professor of Pediatrics at Harvard Medical School. She obtained her masters in medical education through Harvard Medical School. Dr. Huth is program director of the Complex Care Fellowship Program at Boston Children’s Hospital and Co-Chair of the Academic Pediatric Association’s Complex Care and Disability Special Interest Group. She is passionate about patient/family partnership in educational systems design to improve the care of children with medical complexity and disability.
Nikki Montgomery, MA, MEd, GPAC
Director of Strategy and Communications, Family Voices
Nikki’s passion for empowering youth and families spans the last two decades, during which she has been an educator, a health literacy specialist, and a patient advocate. Nikki identifies as neurodivergent and is the parent of a child with autism, complex health care needs, and a rare and disabling genetic condition which her late sister also had (RYR-1 congenital fiber-type disproportion myopathy).
She is the author of the Super Safe Kids pediatric patient safety books and two books for caregivers of children with special health care needs. Nikki currently serves on the Patient Engagement Advisory Panel for the Patient Centered Outcomes Research Institute (PCORI); the Board of Directors for The Superhero Project; and the Patient Experience Policy Forum and Global Patient and Family Advisory Boards for The Beryl Institute, and many other health advocacy roles.