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. 2021 Feb 9;23(2):e19910.
doi: 10.2196/19910.

Online Communities as a Driver for Patient Empowerment: Systematic Review

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Online Communities as a Driver for Patient Empowerment: Systematic Review

Victoria Johansson et al. J Med Internet Res. .

Abstract

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.

Keywords: eHealth; online community; patient empowerment; person-centered care; systematic review.

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Conflict of interest statement

Conflicts of Interest: None declared.

Figures

Figure 1
Figure 1
Main search strategy.
Figure 2
Figure 2
First selection process.
Figure 3
Figure 3
Second selection process.

References

    1. Rappaport J. Empowerment meets narrative: listening to stories and creating settings. Am J Community Psychol. 1995 Oct 01;23(5):795–807. doi: 10.1007/bf02506992. https://onlinelibrary.wiley.com/doi/abs/10.1007/BF02506992 - DOI - DOI - PubMed
    1. Yan L, Peng J, Tan Y. Network dynamics: how can we find patients like us? Inf Syst Res. 2015 Sep 11;26(3):496–512. doi: 10.1287/isre.2015.0585. https://pubsonline.informs.org/doi/abs/10.1287/isre.2015.0585 - DOI - DOI
    1. Smailhodzic E, Hooijsma W, Boonstra A, Langley DJ. Social media use in healthcare: a systematic review of effects on patients and on their relationship with healthcare professionals. BMC Health Serv Res. 2016 Aug 26;16:442. doi: 10.1186/s12913-016-1691-0. https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-016-1... - DOI - DOI - PMC - PubMed
    1. Eysenbach G. The impact of the internet on cancer outcomes. CA Cancer J Clin. 2003;53(6):356–71. doi: 10.3322/canjclin.53.6.356. https://onlinelibrary.wiley.com/resolve/openurl?genre=article&sid=nlm:pu... - DOI - PubMed
    1. Fumagalli LP, Radaelli G, Lettieri E, Bertele' Paolo, Masella C. Patient Empowerment and its neighbours: clarifying the boundaries and their mutual relationships. Health Policy. 2015 Mar;119(3):384–94. doi: 10.1016/j.healthpol.2014.10.017. - DOI - PubMed

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