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Online Communities as a Driver for Patient Empowerment: Systematic Review.

Victoria Johansson1, Anna Sigridur Islind1,2, Tomas Lindroth1,3

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Online communities empower patients by enhancing their mastery and control over health decisions, complementing traditional care. This research explores how these digital spaces foster patient empowerment through various processes and outcomes.

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Area of Science:

  • Health Informatics
  • Patient Engagement
  • Digital Health

Background:

  • Online resources are transforming healthcare management, with patients increasingly seeking information, treatment guidance, and peer support online.
  • Online communities offer potential to enhance quality of care through increased patient empowerment.
  • A research gap exists in understanding the specific ways online communities contribute to patient empowerment.

Purpose of the Study:

  • To synthesize existing research on how online communities contribute to patient empowerment.
  • To address the research question: "In what ways can participation in online communities support patient empowerment?"
  • To examine how patient empowerment is operationalized across different studies, defining it as enablement for individuals to develop mastery and control over life-influencing decisions and actions.

Main Methods:

  • A systematic review was conducted across multiple databases (Scopus, ACM Digital Library, EBSCO, PubMed, Web of Science).
  • Initial search yielded 1187 papers; after duplicate exclusion, 33 peer-reviewed papers were included based on an analytical framework defining patient empowerment and related concepts.

Main Results:

  • Online communities facilitate patient empowerment as both a process and an outcome, complementing traditional healthcare.
  • Findings suggest a need for healthcare professionals to adopt more positive attitudes towards patients' use of online communities.
  • The majority of reviewed online communities (64%) were patient-initiated and well-established.

Conclusions:

  • Online communities support patient empowerment through various processes and outcomes.
  • A new framework is proposed for understanding patient empowerment in online communities at different hierarchical levels.
  • Further research should incorporate healthcare professionals' perspectives on integrating online communities into patient empowerment strategies.