Abstract

BackgroundThe use of online resources has changed how people manage health care processes. Patients seek information about health conditions, guidance in treatment, and support from peers online, complementary to traditional health care trajectories. Online communities have the potential to contribute to the quality of care by increasing patient empowerment; however, there is a gap in research regarding in what way online communities contribute to patient empowerment.ObjectiveWe synthesized research regarding how online communities contribute to patient empowerment to address the research question “In what ways can participation in online communities support patient empowerment?” by studying how patient empowerment is operationalized in different studies. The definition of patient empowerment used in this paper is enablement for people to develop mastery over actions and control over decisions that influence their lives. The mastery is both through processes and outcomes of the development.MethodsA systematic review was conducted by searching in the following databases: Scopus, ACM Digital Library, EBSCO (CINAHL and MEDLINE), PubMed, and Web of Science. In total, there were 1187 papers after excluding duplicates, and through selection processes using an analytical framework with definitions of patient empowerment and related concepts, 33 peer-reviewed papers were included.ResultsFindings indicated that online communities support patient empowerment both as a process and as outcomes of these processes. Additionally, it was seen as a complement to traditional health care and encouragement for health care professionals to have a more positive attitude toward patients’ usage. There was a mix between deductive (19/33, 58%), inductive (11/33, 33%), and a mixed approach (3/33, 9%) of studying patient empowerment in various forms. The online communities in most papers (21/33, 64%) were well-established and represented patients’ initiatives.ConclusionsThere is a need to include professionals' perspectives regarding how health care can embrace patient empowerment through online communities. This systematic review's main contribution is the proposal of a new framework and conceptualization of how patient empowerment in online communities can be understood from different hierarchical levels.

Highlights

  • BackgroundWhen a person faces a difficult situation, for example, when receiving a medical diagnosis, a fear of not being able to control the outcome—feeling disempowered—is a natural response [1]

  • Findings indicated that online communities support patient empowerment both as a process and as outcomes of these processes

  • It was seen as a complement to traditional health care and encouragement for health care professionals to have a more positive attitude toward patients’ usage

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Summary

Introduction

BackgroundWhen a person faces a difficult situation, for example, when receiving a medical diagnosis, a fear of not being able to control the outcome—feeling disempowered—is a natural response [1]. In a study of the US population, it was found that 80% of internet users (74% of the population) looked for health-related issues, and 18% had gone online to find peers with similar health concerns This fundamentally changes how people manage their care process, as patients are able to seek guidance, experiences, and support from peers as complementary resources to manage condition of illness and potential posttreatment with the aim of returning to the new normal self [2]. Online communities serve as supporting resources to increase information and emotional support Another argument is to get the first-hand experience as a complement to health care expertise, which may help patients translate recommendations and instructions into daily self-care strategies. Online communities have the potential to contribute to the quality of care by increasing patient empowerment; there is a gap in research regarding in what way online communities contribute to patient empowerment

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