Technology-Enabled Health Care Collaboration in Pediatric Chronic Illness: Pre-Post Interventional Study for Feasibility, Acceptability, and Clinical Impact of an Electronic Health Record-Linked Platform for Patient-Clinician Partnership.

Lisa Opipari-Arrigan,Dana M H Dykes,Ian Eslick,Shehzad A Saeed,Barbara A Chini,Lisa Burns,Heather C Kaplan,Gary L Mcphail,Peter A Margolis,Sunny Thakkar

doi:10.2196/11968

Abstract

BackgroundMobile health (mHealth) technology has the potential to support the Chronic Care Model’s vision of closed feedback loops and patient-clinician partnerships.ObjectiveThis study aims to evaluate the feasibility, acceptability, and short-term impact of an electronic health record–linked mHealth platform (Orchestra) supporting patient and clinician collaboration through real-time, bidirectional data sharing.MethodsWe conducted a 6-month prospective, pre-post, proof-of-concept study of Orchestra among patients and parents in the Cincinnati Children’s Hospital inflammatory bowel disease (IBD) and cystic fibrosis (CF) clinics. Participants and clinicians used Orchestra during and between visits to complete and view patient-reported outcome (PRO) measures and previsit plans. Surveys completed at baseline and at 3- and 6-month follow-up visits plus data from the platform were used to assess outcomes including PRO completion rates, weekly platform use, disease self-efficacy, and impact on care. Analyses included descriptive statistics; pre-post comparisons; Pearson correlations; and, if applicable, effect sizes.ResultsWe enrolled 92 participants (CF: n=52 and IBD: n=40), and 73% (67/92) completed the study. Average PRO completion was 61%, and average weekly platform use was 80%. Participants reported improvement in self-efficacy from baseline to 6 months (7.90 to 8.44; P=.006). At 6 months, most participants reported that the platform was useful (36/40, 90%) and had a positive impact on their care, including improved visit quality (33/40, 83%), visit collaboration (35/40, 88%), and visit preparation (31/40, 78%). PRO completion was positively associated with multiple indicators of care impact at 3 and 6 months.ConclusionsUse of an mHealth tool to support closed feedback loops through real-time data sharing and patient-clinician collaboration is feasible and shows indications of acceptability and promise as a strategy for improving pediatric chronic illness management.

Highlights

BackgroundOptimal management of pediatric chronic illness requires a different type of health care system [1,2]
The cystic fibrosis (CF) and inflammatory bowel disease (IBD) clinics were chosen to ensure that our study included conditions that varied in disease course, management, and time demands associated with daily care
A total of 92 participants (CF: n=52 and IBD: n=40) from 88 families enrolled in the study (Figure 3)

Summary

Introduction

BackgroundOptimal management of pediatric chronic illness requires a different type of health care system [1,2]. The Chronic Care Model positions informed, activated patients and prepared, proactive clinicians as foundational to improved health outcomes. It is difficult for most clinicians to be informed about what happens outside of the clinic. Most patients have neither easy, understandable access to their own clinical data nor systematic ways to reliably measure and communicate changes in daily functioning. This is a missed opportunity for optimizing health care. Failing to connect what happens day-to-day with clinical decision-making leads to reactive instead of proactive care based on hazy memories, missing information, and subjective impressions of how things have been going. Mobile health (mHealth) technology has the potential to support the Chronic Care Model’s vision of closed feedback loops and patient-clinician partnerships

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Discussion

Conclusion