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], "abstractNote": "Social media provides new opportunities for sharing health-related data online. Although crowdsourcing medical diagnoses is not yet the trend, people are using social media to seek answers and better understand treatments and outcomes as doctors, experts, and patients converge online.", "publicationTitle": "Multimedia, IEEE", "publisher": "", "place": "", "date": "feb. 2012", "volume": "19", "issue": "2", "section": "", "partNumber": "", "partTitle": "", "pages": "2 -3", "series": "", "seriesTitle": "", "seriesText": "", "journalAbbreviation": "", "DOI": "10.1109/MMUL.2012.18", "citationKey": "", "url": "", "accessDate": "", "PMID": "", "PMCID": "", "ISSN": "1070-986X", "archive": "", "archiveLocation": "", "shortTitle": "", "language": "", "libraryCatalog": "IEEE Xplore", "callNumber": "", "rights": "", "extra": "", "tags": [], "collections": [], "relations": {}, "dateAdded": "2012-07-11T19:15:49Z", "dateModified": "2012-07-11T19:15:49Z" } }, { "key": "3ZCGNWT9", "version": 1, "library": { "type": "group", "id": 82836, "name": "TESIS DOCTORAL JUAN DIEGO", "links": { "alternate": { "href": "https://www.zotero.org/groups/tesis_doctoral_juan_diego", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/82836/items/3ZCGNWT9", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/tesis_doctoral_juan_diego/items/3ZCGNWT9", "type": "text/html" } }, "meta": { "createdByUser": { "id": 1066167, "username": "jdlvtulua", "name": "Juan Diego López Vargas", "links": { "alternate": { "href": "https://www.zotero.org/jdlvtulua", "type": "text/html" } } }, "creatorSummary": "Hughes et al.", "parsedDate": "2008-08-06", "numChildren": 1 }, "data": { "key": "3ZCGNWT9", "version": 1, "itemType": "journalArticle", "title": "Health 2.0 and Medicine 2.0: Tensions and Controversies in the Field", "creators": [ { "creatorType": "author", "firstName": "Benjamin", "lastName": "Hughes" }, { "creatorType": "author", "firstName": "Indra", "lastName": "Joshi" }, { "creatorType": "author", "firstName": "Jonathan", "lastName": "Wareham" } ], "abstractNote": "Background\n The term Web 2.0 became popular following the O’Reilly Media Web 2.0 conference in 2004; however, there are difficulties in its application to health and medicine. Principally, the definition published by O’Reilly is criticized for being too amorphous, where other authors claim that Web 2.0 does not really exist. Despite this skepticism, the online community using Web 2.0 tools for health continues to grow, and the term Medicine 2.0 has entered popular nomenclature.\n\nObjective\nThis paper aims to establish a clear definition for Medicine 2.0 and delineate literature that is specific to the field. In addition, we propose a framework for categorizing the existing Medicine 2.0 literature and identify key research themes, underdeveloped research areas, as well as the underlying tensions or controversies in Medicine 2.0’s diverse interest groups.\n\nMethods\n In the first phase, we employ a thematic analysis of online definitions, that is, the most important linked papers, websites, or blogs in the Medicine 2.0 community itself. In a second phase, this definition is then applied across a series of academic papers to review Medicine 2.0’s core literature base, delineating it from a wider concept of eHealth.\n\nResults\n The terms Medicine 2.0 and Health 2.0 were found to be very similar and subsume five major salient themes: (1) the participants involved (doctors, patients, etc); (2) its impact on both traditional and collaborative practices in medicine; (3) its ability to provide personalized health care; (4) its ability to promote ongoing medical education; and (5) its associated method- and tool-related issues, such as potential inaccuracy in enduser-generated content. In comparing definitions of Medicine 2.0 to eHealth, key distinctions are made by the collaborative nature of Medicine 2.0 and its emphasis on personalized health care. However, other elements such as health or medical education remain common for both categories. In addition, this emphasis on personalized health care is not a salient theme within the academic literature. Of 2405 papers originally identified as potentially relevant, we found 56 articles that were exclusively focused on Medicine 2.0 as opposed to wider eHealth discussions. Four major tensions or debates between stakeholders were found in this literature, including (1) the lack of clear Medicine 2.0 definitions, (2) tension due to the loss of control over information as perceived by doctors, (3) the safety issues of inaccurate information, and (4) ownership and privacy issues with the growing body of information created by Medicine 2.0.\n\nConclusion\n This paper is distinguished from previous reviews in that earlier studies mainly introduced specific Medicine 2.0 tools. In addressing the field’s definition via empirical online data, it establishes a literature base and delineates key topics for future research into Medicine 2.0, distinct to that of eHealth.", "publicationTitle": "Journal of Medical Internet Research", "publisher": "", "place": "", "date": "2008-8-6", "volume": "10", "issue": "3", "section": "", "partNumber": "", "partTitle": "", "pages": "", "series": "", "seriesTitle": "", "seriesText": "", "journalAbbreviation": "J Med Internet Res", "DOI": "10.2196/jmir.1056", "citationKey": "", "url": "http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2553249/", "accessDate": "2012-07-11T18:58:41Z", "PMID": "", "PMCID": "", "ISSN": "1438-8871", "archive": "", "archiveLocation": "", "shortTitle": "Health 2.0 and Medicine 2.0", "language": "", "libraryCatalog": "PubMed Central", "callNumber": "", "rights": "", "extra": "PMID: 18682374\nPMCID: PMC2553249", "tags": [], "collections": [], "relations": {}, "dateAdded": "2012-07-11T18:58:51Z", "dateModified": "2012-07-11T18:58:51Z" } }, { "key": "CP4I8KTP", "version": 1, "library": { "type": "group", "id": 82836, "name": "TESIS DOCTORAL JUAN DIEGO", "links": { "alternate": { "href": "https://www.zotero.org/groups/tesis_doctoral_juan_diego", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/82836/items/CP4I8KTP", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/tesis_doctoral_juan_diego/items/CP4I8KTP", "type": "text/html" }, "up": { "href": "https://api.zotero.org/groups/82836/items/3ZCGNWT9", "type": "application/json" } }, "meta": { "createdByUser": { "id": 1066167, "username": "jdlvtulua", "name": "Juan Diego López Vargas", "links": { "alternate": { "href": "https://www.zotero.org/jdlvtulua", "type": "text/html" } } } }, "data": { "key": "CP4I8KTP", "version": 1, "parentItem": "3ZCGNWT9", "itemType": "attachment", "linkMode": "linked_url", "title": "PubMed Central Link", "accessDate": "2012-07-11T18:58:41Z", "url": "http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2553249/", "note": "", "contentType": "text/html", "charset": "", "tags": [], "relations": {}, "dateAdded": "2012-07-11T18:58:51Z", "dateModified": "2012-07-11T18:58:51Z" } }, { "key": "6RJHJZ22", "version": 1, "library": { "type": "group", "id": 82836, "name": "TESIS DOCTORAL JUAN DIEGO", "links": { "alternate": { "href": "https://www.zotero.org/groups/tesis_doctoral_juan_diego", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/82836/items/6RJHJZ22", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/tesis_doctoral_juan_diego/items/6RJHJZ22", "type": "text/html" }, "up": { "href": "https://api.zotero.org/groups/82836/items/SFI37B8D", "type": "application/json" } }, "meta": { "createdByUser": { "id": 1066167, "username": "jdlvtulua", "name": "Juan Diego López Vargas", "links": { "alternate": { "href": "https://www.zotero.org/jdlvtulua", "type": "text/html" } } } }, "data": { "key": "6RJHJZ22", "version": 1, "parentItem": "SFI37B8D", "itemType": "attachment", "linkMode": "linked_url", "title": "PubMed Central Link", "accessDate": "2012-07-11T18:52:27Z", "url": "http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3376509/", "note": "", "contentType": "text/html", "charset": "", "tags": [], "relations": {}, "dateAdded": "2012-07-11T18:52:55Z", "dateModified": "2012-07-11T18:52:55Z" } }, { "key": "SFI37B8D", "version": 1, "library": { "type": "group", "id": 82836, "name": "TESIS DOCTORAL JUAN DIEGO", "links": { "alternate": { "href": "https://www.zotero.org/groups/tesis_doctoral_juan_diego", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/82836/items/SFI37B8D", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/tesis_doctoral_juan_diego/items/SFI37B8D", "type": "text/html" } }, "meta": { "createdByUser": { "id": 1066167, "username": "jdlvtulua", "name": "Juan Diego López Vargas", "links": { "alternate": { "href": "https://www.zotero.org/jdlvtulua", "type": "text/html" } } }, "creatorSummary": "Swan", "parsedDate": "2012-03-07", "numChildren": 1 }, "data": { "key": "SFI37B8D", "version": 1, "itemType": "journalArticle", "title": "Crowdsourced Health Research Studies: An Important Emerging Complement to Clinical Trials in the Public Health Research Ecosystem", "creators": [ { "creatorType": "author", "firstName": "Melanie", "lastName": "Swan" } ], "abstractNote": "Background\nCrowdsourced health research studies are the nexus of three contemporary trends: 1) citizen science (non-professionally trained individuals conducting science-related activities); 2) crowdsourcing (use of web-based technologies to recruit project participants); and 3) medicine 2.0 / health 2.0 (active participation of individuals in their health care particularly using web 2.0 technologies). Crowdsourced health research studies have arisen as a natural extension of the activities of health social networks (online health interest communities), and can be researcher-organized or participant-organized. In the last few years, professional researchers have been crowdsourcing cohorts from health social networks for the conduct of traditional studies. Participants have also begun to organize their own research studies through health social networks and health collaboration communities created especially for the purpose of self-experimentation and the investigation of health-related concerns.\n\nObjective\nThe objective of this analysis is to undertake a comprehensive narrative review of crowdsourced health research studies. This review will assess the status, impact, and prospects of crowdsourced health research studies.\n\nMethods\nCrowdsourced health research studies were identified through a search of literature published from 2000 to 2011 and informal interviews conducted 2008-2011. Keyword terms related to crowdsourcing were sought in Medline/PubMed. Papers that presented results from human health studies that included crowdsourced populations were selected for inclusion. Crowdsourced health research studies not published in the scientific literature were identified by attending industry conferences and events, interviewing attendees, and reviewing related websites.\n\nResults\nParticipatory health is a growing area with individuals using health social networks, crowdsourced studies, smartphone health applications, and personal health records to achieve positive outcomes for a variety of health conditions. PatientsLikeMe and 23andMe are the leading operators of researcher-organized, crowdsourced health research studies. These operators have published findings in the areas of disease research, drug response, user experience in crowdsourced studies, and genetic association. Quantified Self, Genomera, and DIYgenomics are communities of participant-organized health research studies where individuals conduct self-experimentation and group studies. Crowdsourced health research studies have a diversity of intended outcomes and levels of scientific rigor.\n\nConclusions\nParticipatory health initiatives are becoming part of the public health ecosystem and their rapid growth is facilitated by Internet and social networking influences. Large-scale parameter-stratified cohorts have potential to facilitate a next-generation understanding of disease and drug response. Not only is the large size of crowdsourced cohorts an asset to medical discovery, too is the near-immediate speed at which medical findings might be tested and applied. Participatory health initiatives are expanding the scope of medicine from a traditional focus on disease cure to a personalized preventive approach. 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