Patient-Generated Health Data in Pediatric Asthma: Exploratory Study of Providers' Information Needs

Abstract

Background Adolescents are using mobile health apps as a form of self-management to collect data on symptoms, medication adherence, and activity. Adding functionality to an electronic health record (EHR) to accommodate disease-specific patient-generated health data (PGHD) may support clinical care. However, little is known on how to incorporate PGHD in a way that informs care for patients. Pediatric asthma, a prevalent health issue in the United States with 6 million children diagnosed, serves as an exemplar condition to examine information needs related to PGHD. Objective In this study we aimed to identify and prioritize asthma care tasks and decisions based on pediatric asthma guidelines and identify types of PGHD that might support the activities associated with the decisions. The purpose of this work is to provide guidance to mobile health app developers and EHR integration. Methods We searched the literature for exemplar asthma mobile apps and examined the types of PGHD collected. We identified the information needs associated with each decision in accordance with consensus-based guidelines, assessed the suitability of PGHD to meet those needs, and validated our findings with expert asthma providers. Results We mapped guideline-derived information needs to potential PGHD types and found PGHD that may be useful in meeting information needs. Information needs included types of symptoms, symptom triggers, medication adherence, and inhaler technique. Examples of suitable types of PGHD were Asthma Control Test calculations, exposures, and inhaler use. Providers suggested uncontrolled asthma as a place to focus PGHD efforts, indicating that they preferred to review PGHD at the time of the visit. Conclusions We identified a manageable list of information requirements derived from clinical guidelines that can be used to guide the design and integration of PGHD into EHRs to support pediatric asthma management and advance mobile health app development. Mobile health app developers should examine PGHD information needs to inform EHR integration efforts.

Assessment of the Readability of Web-Based Patient Education Material From Major Canadian Pediatric Associations: Cross-sectional Study

“…Additional consideration should be placed on the incorporation of multimedia PEMs [ 43 ]. Qualitative studies should be conducted in the future to better understand caregiver and provider information needs, as well as the barriers toward implementing more functionally accessible PEMs on pediatric association websites [ 44 - 46 ]. Additionally, the quality of the PEMs should be evaluated to determine if the information provided is accurate [ 47 - 49 ].…”

Electronic Patient-Generated Health Data for Healthcare

“…Ideally, the PGHD should not be analyzed in isolation, but in consideration with existing clinical data available on the patient, for example, stored in e-records of one type or another (e.g., electronic medical records, electronic health records, personal health records, mobile personal health records). Although desirable, this raises issues in relation to ensuring PGHD is incorporated into such e-records, which is not straightforward (35,36).…”

Provider Preferences for Patient-Generated Health Data Displays in Pediatric Asthma: A Participatory Design Approach

“…drafted two vignettes based on a set of decisions, information needs, and PGHD derived from evidence-based clinical guidelines for pediatric asthma. 22 The vignettes contained clinical content that emulated pediatric-asthma events in the outpatient setting. The focus of each vignette was on the PGHD needed to support decision making rather than the quality or outcome of decisions.…”