This study investigates the use of personal online health communities by patients with Parkinson's disease to understand if and how it supports patient empowerment. Through interviews and observations involving 18 patients, the research uncovers that implicit norms within these communities—such as limitations on the number and content of postings—hinder patient empowerment. Patients often avoid asking too many questions, fear being perceived as complainers, and are cautious about making knowledge claims about their disease. The findings suggest that changing these norms, through open dialogue between patients and healthcare providers, revising medical education curriculum, and redesigning online health communities, could enhance patient empowerment.
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Visser, Laura M., et al. "Do online communities change power processes in healthcare? Using case studies to examine the use of online health communities by patients with Parkinson's disease." BMJ open 6.11 (2016): e012110.
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