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PatientsLikeMe and Online Patient Support Communities in Dermatology
Mindy D Szeto1, Michelle Hook Sobotka2, Emily Woolhiser3
1Department of Dermatology, University of Minnesota Medical School, Minneapolis, MN, United States.
JMIR Dermatology
|June 26, 2024
Summary
Online patient platforms like PatientsLikeMe (PLM) connect individuals with health conditions. However, users may not represent the general patient population, raising concerns about misinformation and generalizability.
Area of Science:
- Health Informatics
- Social Media in Healthcare
- Patient Engagement Technologies
Background:
- Online platforms facilitate patient experience sharing and community building.
- Platforms like PatientsLikeMe (PLM) are increasingly utilized by individuals with diverse medical conditions.
Purpose of the Study:
- To evaluate the representativeness of online patient communities.
- To identify potential limitations in generalizability and the spread of health information.
Main Methods:
- Analysis of user demographics and self-reported data from online patient platforms.
- Comparative assessment against broader patient population data.
Main Results:
- Online patient communities may not accurately reflect the general patient population.
- Limited generalizability of shared experiences and data is a significant concern.
Conclusions:
- Informed use of online patient platforms is crucial.
- Engagement of healthcare providers is necessary to mitigate risks associated with misinformation and ensure accurate health guidance.
Keywords:
PLMPatientsLikeMeatopic dermatitiscommunity engagementdemographicsdiscussion boardsforumsinternetlived experiencemisinformationonline support communitiesprevalencerepresentationsocial mediaMore Related Videos
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