What do patients complain about online: A systematic review and taxonomy framework based on patient centeredness

Abstract

© 2019 Journal of Medical Internet Research. All rights reserved. Background: Complaints made online by patients about their health care experiences are becoming prevalent because of widespread worldwide internet connectivity. An a priori framework, based on patient centeredness, may be useful in identifying the types of issues patients complain about online across multiple settings. It may also assist in examining whether the determinants of patient-centered care (PCC) mirror the determinants of patient experiences. Objective: The objective of our study was to develop a taxonomy framework for patient complaints online based on patient centeredness and to examine whether the determinants of PCC mirror the determinants of patient experiences. Methods: First, the best fit framework synthesis technique was applied to develop the proposed a priori framework. Second, electronic databases, including Web of Science, Scopus, and PubMed, were searched for articles published between 2000 and June 2018. Studies were only included if they collected primary quantitative data on patients' online complaints. Third, a deductive and inductive thematic analysis approach was adopted to code the themes of recognized complaints into the framework. Results: In total, 17 studies from 5 countries were included in this study. Patient complaint online taxonomies and theme terms varied. According to our framework, patients expressed most dissatisfaction with patient-centered processes (101,586/204,363, 49.71%), followed by prerequisites (appropriate skills and knowledge of physicians; 50,563, 24.74%) and the care environment (48,563/204,363, 23.76%). The least dissatisfied theme was expected outcomes (3651/204,363, 1.79%). People expressed little dissatisfaction with expanded PCC dimensions, such as involvement of family and friends (591/204,363, 0.29%). Variation in the concerns across different countries' patients were also observed. Conclusions: Online complaints made by patients are of major value to health care providers, regulatory bodies, and patients themselves. Our PCC framework can be applied to analyze them under a wide range of conditions, treatments, and countries. This review has shown significant heterogeneity of patients' online complaints across different countries.