Stanley Manne Children’s Research Institute’s Health@Home initiative recently joined the Digital Medicine Society’s Digital Health Measurement Collaborative Community, a project bringing together experts in digital health and members of the U.S. Department of Food and Agriculture’s Center for Devices and Radiological Health to advance the use of digital health measures in research.
The team will develop a set of core digital measures to advance the use of high-value, meaningful digital measures and digital endpoints in clinical research and care. Currently, there is no current agreed-upon measure set that considers not just patient symptoms but other outcomes like family well-being and child function related to digital medicine, said Carolyn Foster, MD, MS, Director of Health@Home, Stanley Manne Children’s Research Institute, and Attending Physician of Advanced General Pediatrics and Primary Care, Ann & Robert H. Lurie Children's Hospital of Chicago. “As a children’s hospital, we specialize in caring for patients with pediatric rare diseases, and our mission is to enhance patient and family outcomes for this population. We participate in many of the foundational research and clinical trials that the core digital measures would be used in.” Importantly, Dr. Foster emphasizes that the focus on digital measures directly aligns with the Health@Home initiative’s work, which aims to catalyze science and innovation outside of hospital walls, study how the home environment impacts child health, and support distributed clinical trials.
Dr. Foster and Aaron Kaat, PhD, Associate Professor of Medical Social Sciences at Northwestern University Feinberg School of Medicine and a measure expert in childhood disability, will provide input on the project’s goals of identifying health concepts of interest, developing a core set of digital clinical measures, determining where the data can be gathered from reliably (common data elements), and shaping operational best practices for the implementation of digital measures and digital measurement products in research and care.