How Patients Use Shared Health Data in an Online Community
Author Information
Author(s): Gunther Eysenbach, Derek Neal Hansen, Lisa Frost, Jeana H Frost, Michael P Massagli
Primary Institution: PatientsLikeMe Inc
Hypothesis
How do patients utilize visual displays of health information to communicate with each other about their treatments and disease experiences?
Conclusion
Patients who share health data within a community can benefit from engaging in dialogues that inform their disease self-management.
Supporting Evidence
- Patients shared personal health data to ask questions and give advice to others.
- Comments referencing health data initiated ongoing discussions among users.
- The platform allowed patients to connect based on shared medical experiences.
Takeaway
When patients share their health information online, they can ask each other questions and give advice, which helps them feel less alone and learn more about managing their health.
Methodology
Qualitative analysis of comments posted by patients in the PatientsLikeMe ALS community that referenced individual-level personal health data.
Limitations
The study focused only on comments that explicitly referenced health data, which may not capture all relevant interactions.
Participant Demographics
Patients diagnosed with amyotrophic lateral sclerosis (ALS), with a majority living in the United States.
Digital Object Identifier (DOI)
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