Spring 2024 Learning Session Highlights PR-COIN Registry Successes & Importance of Data Foundations
We are grateful for convening another productive and inspirational Spring 2024 Learning Session! We gathered as a community to understand network and registry accomplishments, learning about the Data Submission Change Package, hear about research projects and more!
Highlights from this data-quality themed Learning Session include:
Patients & Parents Call for Whole-Child Health
Parent Advocate Susan Peters (Texas Children’s Hospital) shared her family’s story, and they challenge care teams to address mental health in addition to physical health and symptoms. This call-to-action continued with Parent Advocate Darbie Kirk (Seattle Children’s Hospital) and her child speaking to whole-person care and the importance of addressing mental health at care visits.
Keynote Focuses on Visual Analogy
A pediatric nephrologist and health informatician, Dr. Ari Pollack (Seattle Children’s Hospital) gave the Keynote Address at the Spring 2024 Learning Session, entitled “Pictures for Comparison: Designing a Novel Benchmarking Tool to Support Pediatric Kidney Transplant Patients”.
In his capacity as director of the HIVE lab, Dr. Pollack inspired us to take action to capture information and communicate with patients in a way to foster collaboration, to provide the best care for patients and their families. He showcased a wide range of methods to enhance numeracy, or the ability to understand health information, including an app as a way for patients to show and reflect on their journey. He said that using pictures provides a visual analogy that supports numeracy among patient’. “It's about making sure patients or clinicians have the right info at the right time and in the right format.” Dr. Pollack inspired us to take action to capture information and communicate with patients in a way to foster collaboration, to provide the best care for patients and their families.
Harnessing the Power of PR-COIN Data
Network members Jordan Jones, DO, MS (Children’s Mercy – Kansas City), Katelyn Banschbach, MD (Seattle Children’s), Kristen Hayward, MD (Seattle Children’s), and parent advocate Kerry Ferraro (Children’s Hospital of Philadelphia) shared important research and grant updates around Down Syndrome-associated arthritis, ensuring completeness of race and ethnicity data, telemedicine improvement, and patient education. Kudos to all for leveraging PR-COIN data and the Coordinating Center’s Data Analytic Center (DAC) to advance the field!
We extend thanks to our members for another collaborative and productive learning session. We are grateful to our community for making the work we do possible!