AMIA Annu Symp Proc. 2008 Nov 6:217-21.

How the Social Web Supports patient experimentation with a new therapy: The demand for patient-controlled and patient-centered informatics.

Frost JH, Massagli MP, Wicks P, Heywood J.

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PatientsLikeMe, Cambridge, MA, USA.

Abstract

The Internet is not simply being used to search for information about disease and treatment. It is also being used by online disease-focused communities to organize their own experience base and to harness their own talent and insight in service to the cause of achieving better health outcomes. We describe how news of a possible effect of lithium on the course of Amyotrophic Lateral Sclerosis (ALS) was acquired by and diffused through an on-line community and led to participation in a patient-driven observational study of lithium and ALS. Our discussion suggests how the social web drives demand for patient-centered health informatics.

PMID:: 18999176; [PubMed - indexed for MEDLINE]
PMCID: PMC2656086

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MeSH Terms, Substances

MeSH Terms

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Lithium Compounds

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Amyotrophic Lateral Sclerosis - MedlinePlus Health Information

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LITHIUM COMPOUNDS - HSDB

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