{"id":"https://openalex.org/W1967276395","doi":"https://doi.org/10.1002/meet.2009.1450460335","title":"PatientsLikeMe: ALS patients sharing experiences and personal health information online","display_name":"PatientsLikeMe: ALS patients sharing experiences and personal health information online","publication_year":2009,"publication_date":"2009-01-01","ids":{"openalex":"https://openalex.org/W1967276395","doi":"https://doi.org/10.1002/meet.2009.1450460335","mag":"1967276395"},"language":"en","primary_location":{"id":"doi:10.1002/meet.2009.1450460335","is_oa":false,"landing_page_url":"https://doi.org/10.1002/meet.2009.1450460335","pdf_url":null,"source":{"id":"https://openalex.org/S4306523999","display_name":"Proceedings of the American Society for Information Science and Technology","issn_l":"1550-8390","issn":["1550-8390","1936-1734"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Proceedings of the American Society for Information Science and Technology","raw_type":"journal-article"},"type":"article","indexed_in":["crossref"],"open_access":{"is_oa":false,"oa_status":"closed","oa_url":null,"any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5010310160","display_name":"Mia Liza A. Lustria","orcid":"https://orcid.org/0000-0002-1144-2985"},"institutions":[{"id":"https://openalex.org/I103163165","display_name":"Florida State University","ror":"https://ror.org/05g3dte14","country_code":"US","type":"education","lineage":["https://openalex.org/I103163165"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Mia Liza A Lustria","raw_affiliation_strings":["College of Communication and Information, Florida State University, 142 Collegiate Loop, Tallahassee, Florida 32306-2100","College of Communication and Information, Florida State University, 142 Collegiate Loop, Tallahassee, Florida 32306\u20102100"],"affiliations":[{"raw_affiliation_string":"College of Communication and Information, Florida State University, 142 Collegiate Loop, Tallahassee, Florida 32306-2100","institution_ids":["https://openalex.org/I103163165"]},{"raw_affiliation_string":"College of Communication and Information, Florida State University, 142 Collegiate Loop, Tallahassee, Florida 32306\u20102100","institution_ids":["https://openalex.org/I103163165"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5027192087","display_name":"Gary Burnett","orcid":"https://orcid.org/0000-0001-9945-9396"},"institutions":[{"id":"https://openalex.org/I103163165","display_name":"Florida State University","ror":"https://ror.org/05g3dte14","country_code":"US","type":"education","lineage":["https://openalex.org/I103163165"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Gary Burnett","raw_affiliation_strings":["College of Communication and Information, Florida State University, 142 Collegiate Loop, Tallahassee, FL 32306-2100","College of Communication and Information, Florida State University, 142 Collegiate Loop, Tallahassee, FL 32306\u20102100"],"affiliations":[{"raw_affiliation_string":"College of Communication and Information, Florida State University, 142 Collegiate Loop, Tallahassee, FL 32306-2100","institution_ids":["https://openalex.org/I103163165"]},{"raw_affiliation_string":"College of Communication and Information, Florida State University, 142 Collegiate Loop, Tallahassee, FL 32306\u20102100","institution_ids":["https://openalex.org/I103163165"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5081782143","display_name":"Juliann Cortese","orcid":null},"institutions":[{"id":"https://openalex.org/I103163165","display_name":"Florida State University","ror":"https://ror.org/05g3dte14","country_code":"US","type":"education","lineage":["https://openalex.org/I103163165"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Juliann Cortese","raw_affiliation_strings":["College of Communication and Information, Florida State University, University Center, Building C, Suite 3100,Tallahassee, FL 32306-2664"],"affiliations":[{"raw_affiliation_string":"College of Communication and Information, Florida State University, University Center, Building C, Suite 3100,Tallahassee, FL 32306-2664","institution_ids":["https://openalex.org/I103163165"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5059472658","display_name":"Michelle M. Kazmer","orcid":"https://orcid.org/0000-0001-7121-4784"},"institutions":[{"id":"https://openalex.org/I103163165","display_name":"Florida State University","ror":"https://ror.org/05g3dte14","country_code":"US","type":"education","lineage":["https://openalex.org/I103163165"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Michelle Kazmer","raw_affiliation_strings":["College of Communication and Information, Florida State University, 142 Collegiate Loop, Tallahassee, FL 32306-2100","College of Communication and Information, Florida State University, 142 Collegiate Loop, Tallahassee, FL 32306\u20102100"],"affiliations":[{"raw_affiliation_string":"College of Communication and Information, Florida State University, 142 Collegiate Loop, Tallahassee, FL 32306-2100","institution_ids":["https://openalex.org/I103163165"]},{"raw_affiliation_string":"College of Communication and Information, Florida State University, 142 Collegiate Loop, Tallahassee, FL 32306\u20102100","institution_ids":["https://openalex.org/I103163165"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5090161964","display_name":"Jeana Frost","orcid":null},"institutions":[{"id":"https://openalex.org/I4210160115","display_name":"PatientsLikeMe (United States)","ror":"https://ror.org/05hsp8041","country_code":"US","type":"company","lineage":["https://openalex.org/I4210160115"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Jeana Frost","raw_affiliation_strings":["PatientsLikeMe, Inc., 155 Second Street, Cambridge, MA 02141"],"affiliations":[{"raw_affiliation_string":"PatientsLikeMe, Inc., 155 Second Street, Cambridge, MA 02141","institution_ids":["https://openalex.org/I4210160115"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5100462801","display_name":"Ji\u2010Hyun Kim","orcid":"https://orcid.org/0000-0003-2701-4317"},"institutions":[{"id":"https://openalex.org/I103163165","display_name":"Florida State University","ror":"https://ror.org/05g3dte14","country_code":"US","type":"education","lineage":["https://openalex.org/I103163165"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Ji\u2010Hyun Kim","raw_affiliation_strings":["College of Communication and Information, Florida State University, 142 Collegiate Loop, Tallahassee, FL 32306-2100","College of Communication and Information, Florida State University, 142 Collegiate Loop, Tallahassee, FL 32306\u20102100"],"affiliations":[{"raw_affiliation_string":"College of Communication and Information, Florida State University, 142 Collegiate Loop, Tallahassee, FL 32306-2100","institution_ids":["https://openalex.org/I103163165"]},{"raw_affiliation_string":"College of Communication and Information, Florida State University, 142 Collegiate Loop, Tallahassee, FL 32306\u20102100","institution_ids":["https://openalex.org/I103163165"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5042207890","display_name":"Jinxuan Ma","orcid":"https://orcid.org/0000-0002-9719-2939"},"institutions":[{"id":"https://openalex.org/I103163165","display_name":"Florida State University","ror":"https://ror.org/05g3dte14","country_code":"US","type":"education","lineage":["https://openalex.org/I103163165"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Jinxuan Ma","raw_affiliation_strings":["College of Communication and Information, Florida State University, 142 Collegiate Loop, Tallahassee, FL 32306-2100","College of Communication and Information, Florida State University, 142 Collegiate Loop, Tallahassee, FL 32306\u20102100"],"affiliations":[{"raw_affiliation_string":"College of Communication and Information, Florida State University, 142 Collegiate Loop, Tallahassee, FL 32306-2100","institution_ids":["https://openalex.org/I103163165"]},{"raw_affiliation_string":"College of Communication and Information, Florida State University, 142 Collegiate Loop, Tallahassee, FL 32306\u20102100","institution_ids":["https://openalex.org/I103163165"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":7,"corresponding_author_ids":["https://openalex.org/A5010310160","https://openalex.org/A5027192087","https://openalex.org/A5042207890","https://openalex.org/A5059472658","https://openalex.org/A5081782143","https://openalex.org/A5090161964","https://openalex.org/A5100462801"],"corresponding_institution_ids":["https://openalex.org/I103163165","https://openalex.org/I4210160115"],"apc_list":null,"apc_paid":null,"fwci":0.0,"has_fulltext":false,"cited_by_count":1,"citation_normalized_percentile":{"value":0.05985414,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":89,"max":94},"biblio":{"volume":"46","issue":"1","first_page":"1","last_page":"5"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10855","display_name":"Amyotrophic Lateral Sclerosis Research","score":0.9663000106811523,"subfield":{"id":"https://openalex.org/subfields/2728","display_name":"Neurology"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T10855","display_name":"Amyotrophic Lateral Sclerosis Research","score":0.9663000106811523,"subfield":{"id":"https://openalex.org/subfields/2728","display_name":"Neurology"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T11632","display_name":"Family and Disability Support Research","score":0.9333999752998352,"subfield":{"id":"https://openalex.org/subfields/3203","display_name":"Clinical Psychology"},"field":{"id":"https://openalex.org/fields/32","display_name":"Psychology"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},{"id":"https://openalex.org/T11358","display_name":"Dysphagia Assessment and Management","score":0.9276000261306763,"subfield":{"id":"https://openalex.org/subfields/3616","display_name":"Speech and Hearing"},"field":{"id":"https://openalex.org/fields/36","display_name":"Health Professions"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/social-support","display_name":"Social support","score":0.5753554701805115},{"id":"https://openalex.org/keywords/psychosocial","display_name":"Psychosocial","score":0.5530441999435425},{"id":"https://openalex.org/keywords/embarrassment","display_name":"Embarrassment","score":0.5417135953903198},{"id":"https://openalex.org/keywords/support-group","display_name":"Support group","score":0.5222466588020325},{"id":"https://openalex.org/keywords/internet-privacy","display_name":"Internet privacy","score":0.5182609558105469},{"id":"https://openalex.org/keywords/anonymity","display_name":"Anonymity","score":0.5105841755867004},{"id":"https://openalex.org/keywords/disease","display_name":"Disease","score":0.5001220703125},{"id":"https://openalex.org/keywords/information-sharing","display_name":"Information sharing","score":0.4668470323085785},{"id":"https://openalex.org/keywords/quality-of-life","display_name":"Quality of life (healthcare)","score":0.466418594121933},{"id":"https://openalex.org/keywords/psychology","display_name":"Psychology","score":0.4531533718109131},{"id":"https://openalex.org/keywords/coping","display_name":"Coping (psychology)","score":0.4470043182373047},{"id":"https://openalex.org/keywords/medicine","display_name":"Medicine","score":0.3915174901485443},{"id":"https://openalex.org/keywords/world-wide-web","display_name":"World Wide Web","score":0.25161200761795044},{"id":"https://openalex.org/keywords/social-psychology","display_name":"Social psychology","score":0.23720422387123108},{"id":"https://openalex.org/keywords/computer-science","display_name":"Computer science","score":0.21464380621910095},{"id":"https://openalex.org/keywords/clinical-psychology","display_name":"Clinical psychology","score":0.17525601387023926},{"id":"https://openalex.org/keywords/nursing","display_name":"Nursing","score":0.1718939244747162},{"id":"https://openalex.org/keywords/psychiatry","display_name":"Psychiatry","score":0.15341076254844666}],"concepts":[{"id":"https://openalex.org/C2778087770","wikidata":"https://www.wikidata.org/wiki/Q2297111","display_name":"Social support","level":2,"score":0.5753554701805115},{"id":"https://openalex.org/C150966472","wikidata":"https://www.wikidata.org/wiki/Q3410145","display_name":"Psychosocial","level":2,"score":0.5530441999435425},{"id":"https://openalex.org/C2776716606","wikidata":"https://www.wikidata.org/wiki/Q1761451","display_name":"Embarrassment","level":2,"score":0.5417135953903198},{"id":"https://openalex.org/C2778996113","wikidata":"https://www.wikidata.org/wiki/Q3117735","display_name":"Support group","level":2,"score":0.5222466588020325},{"id":"https://openalex.org/C108827166","wikidata":"https://www.wikidata.org/wiki/Q175975","display_name":"Internet privacy","level":1,"score":0.5182609558105469},{"id":"https://openalex.org/C178005623","wikidata":"https://www.wikidata.org/wiki/Q308859","display_name":"Anonymity","level":2,"score":0.5105841755867004},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.5001220703125},{"id":"https://openalex.org/C2776854237","wikidata":"https://www.wikidata.org/wiki/Q6031064","display_name":"Information sharing","level":2,"score":0.4668470323085785},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.466418594121933},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.4531533718109131},{"id":"https://openalex.org/C73282008","wikidata":"https://www.wikidata.org/wiki/Q1759895","display_name":"Coping (psychology)","level":2,"score":0.4470043182373047},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.3915174901485443},{"id":"https://openalex.org/C136764020","wikidata":"https://www.wikidata.org/wiki/Q466","display_name":"World Wide Web","level":1,"score":0.25161200761795044},{"id":"https://openalex.org/C77805123","wikidata":"https://www.wikidata.org/wiki/Q161272","display_name":"Social psychology","level":1,"score":0.23720422387123108},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.21464380621910095},{"id":"https://openalex.org/C70410870","wikidata":"https://www.wikidata.org/wiki/Q199906","display_name":"Clinical psychology","level":1,"score":0.17525601387023926},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.1718939244747162},{"id":"https://openalex.org/C118552586","wikidata":"https://www.wikidata.org/wiki/Q7867","display_name":"Psychiatry","level":1,"score":0.15341076254844666},{"id":"https://openalex.org/C38652104","wikidata":"https://www.wikidata.org/wiki/Q3510521","display_name":"Computer security","level":1,"score":0.0},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.0}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.1002/meet.2009.1450460335","is_oa":false,"landing_page_url":"https://doi.org/10.1002/meet.2009.1450460335","pdf_url":null,"source":{"id":"https://openalex.org/S4306523999","display_name":"Proceedings of the American Society for Information Science and Technology","issn_l":"1550-8390","issn":["1550-8390","1936-1734"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Proceedings of the American Society for Information Science and Technology","raw_type":"journal-article"}],"best_oa_location":null,"sustainable_development_goals":[{"score":0.699999988079071,"id":"https://metadata.un.org/sdg/16","display_name":"Peace, Justice and strong institutions"}],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W1950188135","https://openalex.org/W2027060493","https://openalex.org/W2951230422","https://openalex.org/W2532117270","https://openalex.org/W2348594746","https://openalex.org/W4387455197","https://openalex.org/W4389303916","https://openalex.org/W1977651687","https://openalex.org/W2991431576","https://openalex.org/W2900890108"],"abstract_inverted_index":{"Abstract":[0],"The":[1,178,204,224,316],"literature":[2],"provides":[3],"increasing":[4],"evidence":[5],"of":[6,9,20,22,37,60,77,88,120,142,180,188,232,271,289,309,326],"the":[7,14,35,75,186,233,262,268,287],"benefits":[8],"social":[10,78,164,190],"support":[11,26,79,105,165,191],"groups":[12,27,106,192],"on":[13,228,306],"psychosocial":[15],"functioning":[16,292],"and":[17,43,66,70,90,122,172,199,221,249,264,281,293,304,334],"health\u2010related":[18],"quality":[19,36],"life":[21],"chronically\u2010ill":[23],"patients.":[24,53],"Social":[25],"have":[28,73],"been":[29],"found":[30],"to":[31,83,126,138,156,160,286,301,312,318,329],"improve":[32],"coping,":[33],"enhance":[34],"life,":[38],"facilitate":[39],"health":[40,129,202],"decision":[41],"making,":[42],"in":[44,63,114,267,278,314,338],"some":[45,115],"cases,":[46,116],"increase":[47],"survival":[48],"time":[49],"among":[50],"chronic":[51,98,211],"disease":[52,252,260,333],"Patients":[54],"benefit":[55],"from":[56,96],"a":[57,64,118,139,229,247,307],"strong":[58],"sense":[59],"shared":[61],"experiences":[62],"cooperative":[65],"symbiotic":[67],"environment.":[68],"Information":[69],"communication":[71],"technologies":[72,155,311],"extended":[74,185],"capabilities":[76,187],"groups,":[80],"enabling":[81],"patients":[82,209,297],"share":[84,161],"information":[85,130,143,174],"across":[86],"barriers":[87],"geography":[89],"time,":[91],"benefitting":[92],"especially":[93],"those":[94],"suffering":[95],"rare":[97,248],"diseases":[99,212],"who":[100],"may":[101],"not":[102,162],"find":[103],"similar":[104],"within":[107,236],"their":[108,168,332,339],"immediate":[109],"communities.":[110],"Online":[111],"environments":[112],"also,":[113],"provide":[117],"measure":[119],"anonymity":[121],"opportunity":[123],"for":[124,197],"people":[125],"disclose":[127],"sensitive":[128],"without":[131],"embarrassment":[132],"while":[133],"also":[134,167],"allowing":[135],"them":[136],"access":[137],"wider":[140],"variety":[141,308],"resources.":[144],"PatientsLikeMe":[145,183],"(PLM)":[146],"is":[147,246,322],"an":[148,323],"online":[149,189],"community":[150,235],"that":[151],"uses":[152],"Web":[153],"2.0":[154],"allow":[157],"its":[158,181],"members":[159],"only":[163],"but":[166],"symptomatology,":[169],"treatment,":[170],"medication,":[171],"outcome":[173],"with":[175,210,320,331],"other":[176],"members.":[177],"first":[179],"kind,":[182],"has":[184],"by":[193],"introducing":[194],"powerful":[195],"tools":[196],"sharing":[198],"analyzing":[200],"personal":[201],"information.":[203],"website":[205],"currently":[206],"supports":[207],"2,300":[208],"like":[213],"ALS":[214,234,238,284],"(Lou":[215],"Gehrig's":[216,244],"Disease),":[217],"Multiple":[218],"Sclerosis":[219],"(MS),":[220],"Parkinson's":[222],"Disease.":[223],"current":[225],"study":[226],"focuses":[227],"qualitative":[230],"analysis":[231],"PLM.":[237],"(amyotrophic":[239],"lateral":[240],"sclerosis),":[241],"or":[242],"Lou":[243],"disease,":[245],"incurable":[250],"life\u2010altering":[251],"affecting":[253],"approximately":[254],"30,000":[255],"Americans.":[256],"This":[257],"fatal,":[258],"neurodegenerative":[259],"attacks":[261],"nerves":[263],"muscles,":[265],"resulting":[266],"progressive":[269],"loss":[270],"voluntary":[272,290],"motor":[273,291],"function":[274],"and,":[275],"eventually,":[276],"difficulties":[277],"speaking,":[279],"swallowing,":[280],"breathing.":[282],"While":[283],"contributes":[285],"weakening":[288],"eventual":[294],"paralysis,":[295],"most":[296],"are":[298],"still":[299],"able":[300],"think":[302],"clearly":[303],"rely":[305],"assistive":[310],"aid":[313],"communication.":[315],"ability":[317,328],"communicate":[319],"others":[321],"important":[324],"aspect":[325],"patients'":[327],"cope":[330],"remain":[335],"active":[336],"participants":[337],"own":[340],"care.":[341]},"counts_by_year":[{"year":2022,"cited_by_count":1}],"updated_date":"2025-11-06T03:46:38.306776","created_date":"2025-10-10T00:00:00"}
