PatientsLikeMe: Consumer health vocabulary as a folksonomy.
PatientsLikeMe is an online social networking community. Subcommunities center on three diagnoses: Amyotrophic Lateral Sclerosis, Multiple Sclerosis and Parkinsons Disease. Community members can describe their symptoms online in natural language, resulting in folksonomic tags available for clinical analysis and for browsing by other users to find patients like me. Forty-three percent of PatientsLikeMe symptom terms are present as exact (24%) or synonymous (19%) terms in the Unified Medical Language System Metathesaurus (National Library of Medicine; 2007AC). Slightly more than half of the symptom terms either do not match the UMLS, or are unclassifiable. A clinical vocabulary, SNOMED CT, accounts for 93% of the matching terms. Analysis of the failed matches reveals challenges for online patient communication, not only with healthcare professionals, but with other patients. In a Web 2.0 environment with lowered barriers between consumers and professionals, a deficiency in knowledge representation affects not only professionals, but consumers as well. (+info)
How the Social Web Supports patient experimentation with a new therapy: The demand for patient-controlled and patient-centered informatics.
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. (+info)
A scientific collaboration tool built on the facebook platform.
We describe an application ("Medline Publications")written for the Facebook platform that allows users to maintain and publish a list of their own Medline-indexed publications, as well as easily access their contacts lists. The system is semi-automatic in that it interfaces directly with the National Library of Medicine's PubMed database to find and retrieve citation data. Furthermore, the system has the capability to present the user with sets of other users with similar publication profiles. As of July 2008,Medline Publications has attracted approximately 759 users, 624 of which have listed a total of 5,193 unique publications. (+info)
Teaching Web 2.0 technologies using Web 2.0 technologies.
New types of social Internet applications (often referred to as Web 2.0) are becoming increasingly popular within higher education environments. Although developed primarily for entertainment and social communication within the general population, applications such as blogs, social video sites, and virtual worlds are being adopted by higher education institutions. These newer applications differ from standard Web sites in that they involve the users in creating and distributing information, hence effectively changing how the Web is used for knowledge generation and dispersion. Although Web 2.0 applications offer exciting new ways to teach, they should not be the core of instructional planning, but rather selected only after learning objectives and instructional strategies have been identified. This paper provides an overview of prominent Web 2.0 applications, explains how they are being used within education environments, and elaborates on some of the potential opportunities and challenges that these applications present. (+info)
Been there, done that, wrote the blog: the choices and challenges of supporting adolescents and young adults with cancer.