Online Communities as a Driver for Patient Empowerment: Systematic Review

BACKGROUND: The 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. OBJECTIVE: We 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. METHODS: A 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. RESULTS: Findings 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. CONCLUSIONS: There 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. CC BY 4.0Funding was provided by the Swedish Cancer Society (Senior Clinical Investigator Award; CAN 2016/509), the Swedish ResearchCouncil (2017-01103), the agreement concerning research and education of doctors (ALFGBG-716581) and the Region VästraGötaland Healthcare Committee (Hälso- och sjukvårdsstyrelsen; VGFOUREG-855181 and 931677).