We describe the user-centered development of an electronic medical record–based portal, “MyAsthma,” designed to facilitate shared decision making in pediatric asthma. Interviews and focus groups with 7 parents of children with asthma and 51 clinical team members elicited 2 overarching requirements: that the portal should support sustained communication and ensure patient safety. Parents and clinicians prioritized features including collecting parent and child concerns and goals; symptom, side effect, and medication adherence tracking with decision support; and accessible educational materials. Iterative usability testing refined the system. MyAsthma provides a model for using technology to foster shared decision making in ambulatory care settings.
Pediatric Research Consortium (PeRC) (Drs Fiks and Grundmeier), Center for Biomedical Informatics (Drs Fiks and Grundmeier and Mr Karavite), PolicyLab (Dr Fiks and Mss Mayne and DeBartolo), and The Center for Pediatric Clinical Effectiveness (Dr Fiks and Mss Mayne and DeBartolo), The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania; and Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia (Drs Fiks and Grundmeier).
Correspondence: Alexander G. Fiks, MD, The Children's Hospital of Philadelphia, 3535 Market Ste, Room 1546, Philadelphia, PA 19104 (firstname.lastname@example.org).
This project was supported by the Chair's Initiative Grant and the William Wikoff Smith Endowed Chair in Pediatric Genomics from The Children's Hospital of Philadelphia (CHOP) and by award no. K23HD059919 from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). This study was also supported by the Chronic Care Initiative, a Pennsylvania state learning collaborative begun by the Pennsylvania Governor's Office of Healthcare Reform in 2008 and now supported by the Centers for Medicare & Medicaid Services. The Pediatric Research Consortium was established with funding from the Agency for Health Care Research and Quality (AHRQ) and is part of C-PRL, the AHRQ-funded Center for Pediatric Practice Research and Learning (1P30HS021645). The authors thank Ryan O'Hara, LeMar Davidson, James Massey, Trude Haecker, and Pete White for their support with the conduct of this research. They also thank the network of primary care clinicians, the patients, and the families for their contributions to clinical research through the Pediatric Research Consortium at CHOP.
Drs Fiks and Grundmeier are coinventors of the “Care Assistant” software that was used to implement the portal in the electronic medical record in this study. They hold no patent on the software and have earned no money from this invention. No licensing agreement exists. None of the sponsors participated in the design and conduct of the study; collection, management, analysis, and interpretation of the data; or preparation, review, or approval of the manuscript. Its contents are solely the responsibility of the authors and do not necessarily represent the official view of CHOP or NICHD.
The authors have disclosed that they have no significant relationships with, or financial interest in, any commercial companies pertaining to this article.