[ { "key": "S7JICJT7", "version": 1, "library": { "type": "group", "id": 83005, "name": "tema en salud", "links": { "alternate": { "href": "https://www.zotero.org/groups/tema_en_salud", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/83005/items/S7JICJT7", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/tema_en_salud/items/S7JICJT7", "type": "text/html" }, "up": { "href": "https://api.zotero.org/groups/83005/items/J2XRTWN6", "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": "S7JICJT7", "version": 1, "parentItem": "J2XRTWN6", "itemType": "attachment", "linkMode": "linked_url", "title": "PubMed Central Link", "accessDate": "2012-07-18T11:29:20Z", "url": "http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3376509/", "note": "", "contentType": "text/html", "charset": "", "tags": [], "relations": {}, "dateAdded": "2012-07-18T11:29:20Z", "dateModified": "2012-07-18T11:29:20Z" } }, { "key": "J2XRTWN6", "version": 1, "library": { "type": "group", "id": 83005, "name": "tema en salud", "links": { "alternate": { "href": "https://www.zotero.org/groups/tema_en_salud", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/83005/items/J2XRTWN6", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/tema_en_salud/items/J2XRTWN6", "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": "J2XRTWN6", "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. Crowdsourced health research studies are a promising complement and extension to traditional clinical trials as a model for the conduct of health research.", "publicationTitle": "Journal of Medical Internet Research", "publisher": "", "place": "", "date": "2012-3-07", "volume": "14", "issue": "2", "section": "", "partNumber": "", "partTitle": "", "pages": "", "series": "", "seriesTitle": "", "seriesText": "", "journalAbbreviation": "J Med Internet Res", "DOI": "10.2196/jmir.1988", "citationKey": "", "url": "http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3376509/", "accessDate": "2012-07-18T11:29:20Z", "PMID": "", "PMCID": "", "ISSN": "1439-4456", "archive": "", "archiveLocation": "", "shortTitle": "Crowdsourced Health Research Studies", "language": "", "libraryCatalog": "PubMed Central", "callNumber": "", "rights": "", "extra": "PMID: 22397809\nPMCID: PMC3376509", "tags": [], "collections": [], "relations": {}, "dateAdded": "2012-07-18T11:29:20Z", "dateModified": "2012-07-18T11:29:20Z" } }, { "key": "4GNKNFEU", "version": 1, "library": { "type": "group", "id": 83005, "name": "tema en salud", "links": { "alternate": { "href": "https://www.zotero.org/groups/tema_en_salud", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/83005/items/4GNKNFEU", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/tema_en_salud/items/4GNKNFEU", "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": "Tung et al.", "parsedDate": "2011", "numChildren": 0 }, "data": { "key": "4GNKNFEU", "version": 1, "itemType": "journalArticle", "title": "Efficient replication of over 180 genetic associations with self-reported medical data", "creators": [ { "creatorType": "author", "firstName": "Joyce Y", "lastName": "Tung" }, { "creatorType": "author", "firstName": "Chuong B", "lastName": "Do" }, { "creatorType": "author", "firstName": "David A", "lastName": "Hinds" }, { "creatorType": "author", "firstName": "Amy K", "lastName": "Kiefer" }, { "creatorType": "author", "firstName": "J Michael", "lastName": "Macpherson" }, { "creatorType": "author", "firstName": "Arnab B", "lastName": "Chowdry" }, { "creatorType": "author", "firstName": "Uta", "lastName": "Francke" }, { "creatorType": "author", "firstName": "Brian T", "lastName": "Naughton" }, { "creatorType": "author", "firstName": "Joanna L", "lastName": "Mountain" }, { "creatorType": "author", "firstName": "Anne", "lastName": "Wojcicki" }, { "creatorType": "author", "firstName": "Nicholas", "lastName": "Eriksson" } ], "abstractNote": "While the cost and speed of generating genomic data have come down dramatically in recent years, the slow pace of collecting medical data for large cohorts continues to hamper genetic research. Here we evaluate a novel online framework for obtaining large amounts of medical information from a recontactable cohort by assessing our ability to replicate genetic associations using these data. Using web-based questionnaires, we gathered self-reported data on 50 medical phenotypes from a generally unselected cohort of over 20,000 genotyped individuals. Of a list of genetic associations curated by NHGRI, we successfully replicated about 75% of the associations that we expected to (based on the number of cases in our cohort and reported odds ratios, and excluding a set of associations with contradictory published evidence). Altogether we replicated over 180 previously reported associations, including many for type 2 diabetes, prostate cancer, cholesterol levels, and multiple sclerosis. We found significant variation across categories of conditions in the percentage of expected associations that we were able to replicate, which may reflect systematic inflation of the effects in some initial reports, or differences across diseases in the likelihood of misdiagnosis or misreport. We also demonstrated that we could improve replication success by taking advantage of our recontactable cohort, offering more in-depth questions to refine self-reported diagnoses. Our data suggest that online collection of self-reported data from a recontactable cohort may be a viable method for both broad and deep phenotyping in large populations.", "publicationTitle": "PloS one", "publisher": "", "place": "", "date": "2011", "volume": "6", "issue": "8", "section": "", "partNumber": "", "partTitle": "", "pages": "e23473", "series": "", "seriesTitle": "", "seriesText": "", "journalAbbreviation": "PLoS ONE", "DOI": "10.1371/journal.pone.0023473", "citationKey": "", "url": "http://www.ncbi.nlm.nih.gov/pubmed/21858135", "accessDate": "2012-07-18T11:22:25Z", "PMID": "", "PMCID": "", "ISSN": "1932-6203", "archive": "", "archiveLocation": "", "shortTitle": "", "language": "", "libraryCatalog": "NCBI PubMed", "callNumber": "", "rights": "", "extra": "PMID: 21858135", "tags": [ { "tag": "Adult", "type": 1 }, { "tag": "Aged", "type": 1 }, { "tag": "Cohort Studies", "type": 1 }, { "tag": "Female", "type": 1 }, { "tag": "Genetic Association Studies", "type": 1 }, { "tag": "Genome, Human", "type": 1 }, { "tag": "Genome-Wide Association Study", "type": 1 }, { "tag": "Genotype", "type": 1 }, { "tag": "Humans", "type": 1 }, { "tag": "Logistic Models", "type": 1 }, { "tag": "Male", "type": 1 }, { "tag": "Middle Aged", "type": 1 }, { "tag": "Odds Ratio", "type": 1 }, { "tag": "Polymorphism, Single Nucleotide", "type": 1 }, { "tag": "Questionnaires", "type": 1 }, { "tag": "Young Adult", "type": 1 } ], "collections": [], "relations": {}, "dateAdded": "2012-07-18T11:22:25Z", "dateModified": "2012-07-18T11:22:25Z" } }, { "key": "WTBVF3BU", "version": 1, "library": { "type": "group", "id": 83005, "name": "tema en salud", "links": { "alternate": { "href": "https://www.zotero.org/groups/tema_en_salud", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/83005/items/WTBVF3BU", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/tema_en_salud/items/WTBVF3BU", "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": "Do et al.", "parsedDate": "2011-06", "numChildren": 0 }, "data": { "key": "WTBVF3BU", "version": 1, "itemType": "journalArticle", "title": "Web-based genome-wide association study identifies two novel loci and a substantial genetic component for Parkinson's disease", "creators": [ { "creatorType": "author", "firstName": "Chuong B", "lastName": "Do" }, { "creatorType": "author", "firstName": "Joyce Y", "lastName": "Tung" }, { "creatorType": "author", "firstName": "Elizabeth", "lastName": "Dorfman" }, { "creatorType": "author", "firstName": "Amy K", "lastName": "Kiefer" }, { "creatorType": "author", "firstName": "Emily M", "lastName": "Drabant" }, { "creatorType": "author", "firstName": "Uta", "lastName": "Francke" }, { "creatorType": "author", "firstName": "Joanna L", "lastName": "Mountain" }, { "creatorType": "author", "firstName": "Samuel M", "lastName": "Goldman" }, { "creatorType": "author", "firstName": "Caroline M", "lastName": "Tanner" }, { "creatorType": "author", "firstName": "J William", "lastName": "Langston" }, { "creatorType": "author", "firstName": "Anne", "lastName": "Wojcicki" }, { "creatorType": "author", "firstName": "Nicholas", "lastName": "Eriksson" } ], "abstractNote": "Although the causes of Parkinson's disease (PD) are thought to be primarily environmental, recent studies suggest that a number of genes influence susceptibility. Using targeted case recruitment and online survey instruments, we conducted the largest case-control genome-wide association study (GWAS) of PD based on a single collection of individuals to date (3,426 cases and 29,624 controls). We discovered two novel, genome-wide significant associations with PD-rs6812193 near SCARB2 (p = 7.6 × 10(-10), OR = 0.84) and rs11868035 near SREBF1/RAI1 (p = 5.6 × 10(-8), OR = 0.85)-both replicated in an independent cohort. We also replicated 20 previously discovered genetic associations (including LRRK2, GBA, SNCA, MAPT, GAK, and the HLA region), providing support for our novel study design. Relying on a recently proposed method based on genome-wide sharing estimates between distantly related individuals, we estimated the heritability of PD to be at least 0.27. Finally, using sparse regression techniques, we constructed predictive models that account for 6%-7% of the total variance in liability and that suggest the presence of true associations just beyond genome-wide significance, as confirmed through both internal and external cross-validation. These results indicate a substantial, but by no means total, contribution of genetics underlying susceptibility to both early-onset and late-onset PD, suggesting that, despite the novel associations discovered here and elsewhere, the majority of the genetic component for Parkinson's disease remains to be discovered.", "publicationTitle": "PLoS genetics", "publisher": "", "place": "", "date": "Jun 2011", "volume": "7", "issue": "6", "section": "", "partNumber": "", "partTitle": "", "pages": "e1002141", "series": "", "seriesTitle": "", "seriesText": "", "journalAbbreviation": "PLoS Genet.", "DOI": "10.1371/journal.pgen.1002141", "citationKey": "", "url": "http://www.ncbi.nlm.nih.gov/pubmed/21738487", "accessDate": "2012-07-18T11:20:40Z", "PMID": "", "PMCID": "", "ISSN": "1553-7404", "archive": "", "archiveLocation": "", "shortTitle": "", "language": "", "libraryCatalog": "NCBI PubMed", "callNumber": "", "rights": "", "extra": "PMID: 21738487", "tags": [ { "tag": "Databases, Factual", "type": 1 }, { "tag": "Genetic Loci", "type": 1 }, { "tag": "Genetic Predisposition to Disease", "type": 1 }, { "tag": "Genome-Wide Association Study", "type": 1 }, { "tag": "Heredity", "type": 1 }, { "tag": "Humans", "type": 1 }, { "tag": "Internet", "type": 1 }, { "tag": "Parkinson Disease", "type": 1 }, { "tag": "Polymorphism, Single Nucleotide", "type": 1 }, { "tag": "Risk Assessment", "type": 1 } ], "collections": [], "relations": {}, "dateAdded": "2012-07-18T11:20:40Z", "dateModified": "2012-07-18T11:20:40Z" } }, { "key": "IVEXB3H9", "version": 1, "library": { "type": "group", "id": 83005, "name": "tema en salud", "links": { "alternate": { "href": "https://www.zotero.org/groups/tema_en_salud", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/83005/items/IVEXB3H9", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/tema_en_salud/items/IVEXB3H9", "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": "IVEXB3H9", "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. Crowdsourced health research studies are a promising complement and extension to traditional clinical trials as a model for the conduct of health research.", "publicationTitle": "Journal of Medical Internet Research", "publisher": "", "place": "", "date": "2012-3-07", "volume": "14", "issue": "2", "section": "", "partNumber": "", "partTitle": "", "pages": "", "series": "", "seriesTitle": "", "seriesText": "", "journalAbbreviation": "J Med Internet Res", "DOI": "10.2196/jmir.1988", "citationKey": "", "url": "http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3376509/", "accessDate": "2012-07-18T11:12:20Z", "PMID": "", "PMCID": "", "ISSN": "1439-4456", "archive": "", "archiveLocation": "", "shortTitle": "Crowdsourced Health Research Studies", "language": "", "libraryCatalog": "PubMed Central", "callNumber": "", "rights": "", "extra": "PMID: 22397809\nPMCID: PMC3376509", "tags": [], "collections": [], "relations": {}, "dateAdded": "2012-07-18T11:12:20Z", "dateModified": "2012-07-18T11:12:20Z" } }, { "key": "77V7NJHE", "version": 1, "library": { "type": "group", "id": 83005, "name": "tema en salud", "links": { "alternate": { "href": "https://www.zotero.org/groups/tema_en_salud", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/83005/items/77V7NJHE", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/tema_en_salud/items/77V7NJHE", "type": "text/html" }, "up": { "href": "https://api.zotero.org/groups/83005/items/IVEXB3H9", "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": "77V7NJHE", "version": 1, "parentItem": "IVEXB3H9", "itemType": "attachment", "linkMode": "linked_url", "title": "PubMed Central Link", "accessDate": "2012-07-18T11:12:20Z", "url": "http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3376509/", "note": "", "contentType": "text/html", "charset": "", "tags": [], "relations": {}, "dateAdded": "2012-07-18T11:12:20Z", "dateModified": "2012-07-18T11:12:20Z" } }, { "key": "FB7UG9G4", "version": 1, "library": { "type": "group", "id": 83005, "name": "tema en salud", "links": { "alternate": { "href": "https://www.zotero.org/groups/tema_en_salud", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/83005/items/FB7UG9G4", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/tema_en_salud/items/FB7UG9G4", "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": "Eysenbach", "parsedDate": "2008-08-25", "numChildren": 1 }, "data": { "key": "FB7UG9G4", "version": 1, "itemType": "journalArticle", "title": "Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation, and Openness", "creators": [ { "creatorType": "author", "firstName": "Gunther", "lastName": "Eysenbach" } ], "abstractNote": "In a very significant development for eHealth, a broad adoption of Web 2.0 technologies and approaches coincides with the more recent emergence of Personal Health Application Platforms and Personally Controlled Health Records such as Google Health, Microsoft HealthVault, and Dossia. “Medicine 2.0” applications, services, and tools are defined as Web-based services for health care consumers, caregivers, patients, health professionals, and biomedical researchers, that use Web 2.0 technologies and/or semantic web and virtual reality approaches to enable and facilitate specifically 1) social networking, 2) participation, 3) apomediation, 4) openness, and 5) collaboration, within and between these user groups. The Journal of Medical Internet Research (JMIR) publishes a Medicine 2.0 theme issue and sponsors a conference on “How Social Networking and Web 2.0 changes Health, Health Care, Medicine, and Biomedical Research”, to stimulate and encourage research in these five areas.", "publicationTitle": "Journal of Medical Internet Research", "publisher": "", "place": "", "date": "2008-8-25", "volume": "10", "issue": "3", "section": "", "partNumber": "", "partTitle": "", "pages": "", "series": "", "seriesTitle": "", "seriesText": "", "journalAbbreviation": "J Med Internet Res", "DOI": "10.2196/jmir.1030", "citationKey": "", "url": "http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2626430/", "accessDate": "2012-07-18T11:04:30Z", "PMID": "", "PMCID": "", "ISSN": "1438-8871", "archive": "", "archiveLocation": "", "shortTitle": "Medicine 2.0", "language": "", "libraryCatalog": "PubMed Central", "callNumber": "", "rights": "", "extra": "PMID: 18725354\nPMCID: PMC2626430", "tags": [], "collections": [], 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