Fall 2023 Learning Session Inspires & Informs
It was wonderful to gather again in-person this October at Seattle Children’s Building Cure in Seattle, WA, and virtually on Webex. We had 87 participants join us on Day 1 and 76 on Day 2. With the registry transition behind us, we gathered as a community to learn about using data to drive quality improvement, the tools and new features available in Phlox, ongoing PR-COIN research, and received inspiring parent ignite talks.
Over the two days, we celebrated the contributions of a founding PR-COIN Parent Advocate, Angela Young (read her son’s story here) of Cincinnati Children’s, who will be stepping down as her JIA child transitions to adult care. Angela received the inaugural Nancy Griffin Award for her important contributions to JIA patients and families through her work with PR-COIN, including as the first parent involved, she began recruitment of other parents into the network. Angela contributed abundantly to parent engagement in PR-COIN and research projects, to development of Shared Decision-Making cards, Helping Hands Handbook, and inspirational videos. She has been a tireless political advocate for pediatric rheumatology and we are so grateful for her.
We also heard uplifting messages from Parent Advocates Heidi Barrett of Seattle Children’s and Laura Bouslaugh of Children’s Mercy – Kansas City (read her daughter’s story here), inspiring us to continue in our work to improve care and outcomes for patients and their families. We are so grateful to Angela, Heidi, Laura, and all our wonderful PR-COIN Parent advocates – thank you for generously sharing your time, skillsets, and stories with us!
Esi Morgan, MD, MSCE of the Seattle Children’s Coordinating Center, shared network updates on registry measures & reports, data capture & data quality, and a reminder of PR-COIN’s why and how. We also heard a wonderful keynote presentation from David Hooper, MD, MS, Principal Investigator of Improving Renal Outcomes Collaborative (IROC), who shared IROC’s journey in their path to mastery framework and inspired us with their measures-driven improvements through use of quality improvement tools and assessments.
John Bostick, CEO and Founder of Hive Networks, gave a rousing talk on the power of Learning Health Networks and the exponential progress made possible through peer-to-peer collaborative and sharing. Magen Phillips, MPH (Hive Networks) shared new Phlox QI and collaboration features and walked us through data reporting in the Outcomes feature.
We received important updates from the Outcomes, Measures, Informatics, Scientific Development & Oversight, and Engagement Committees. Tzielan Lee, MD (Stanford Children’s Health), shared best practices around PRO workflows, and the Children’s Mercy – Kansas City Team shared best practices around electronic data capture (and enthusiastically plugged the high-level of support given by Magen Phillips of Hive Networks). We are thankful to all the teams who produced and shared their center storyboards in the breakout sessions so we could all learn from each other. Sandy Burham, MD, MSCE (Children’s Hospital of Philadelphia) presented insightful work on closing equity gaps and adapting to change through the pandemic and beyond.
Kristen Hayward, MD, MS (Seattle Children’s) gave a fabulous presentation on the change package developed for the telemedicine grant project, which will help centers standardize and optimize the way they perform telemedicine visits. We also heard research updates from Bin Huang, PhD (Cincinnati Children’s), on the PCATS project and fascinating causal inference algorithms to identify best personalized treatment, and from Katelyn Banschbach, MD (Seattle Children’s), on a race and ethnicity data quality project involving 7 PR-COIN centers.
PR-COIN’s Clinical Quality Consultant, Erik Friedrichsen, MPH, shared updates on the PR-COIN Quality Improvement Framework and gave a very well-received tutorial on creating Pareto charts and using the impact and effort matrix & (PICK chart).
We are thankful for all who give their time and expertise to move the work of PR-COIN forward. See you in Spring!