{"id":"https://openalex.org/W4413039980","doi":"https://doi.org/10.3233/shti250878","title":"Patient-Generated Health Data Elements: Developing a Data Model for Preference-Sensitive Conditions","display_name":"Patient-Generated Health Data Elements: Developing a Data Model for Preference-Sensitive Conditions","publication_year":2025,"publication_date":"2025-08-07","ids":{"openalex":"https://openalex.org/W4413039980","doi":"https://doi.org/10.3233/shti250878","pmid":"https://pubmed.ncbi.nlm.nih.gov/40775896"},"language":"en","primary_location":{"id":"doi:10.3233/shti250878","is_oa":true,"landing_page_url":"https://doi.org/10.3233/shti250878","pdf_url":null,"source":{"id":"https://openalex.org/S4210179765","display_name":"Studies in health technology and informatics","issn_l":"0926-9630","issn":["0926-9630","1879-8365"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310318577","host_organization_name":"IOS Press","host_organization_lineage":["https://openalex.org/P4310318577"],"host_organization_lineage_names":["IOS Press"],"type":"book series"},"license":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Studies in Health Technology and Informatics","raw_type":"book-chapter"},"type":"article","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"hybrid","oa_url":"https://doi.org/10.3233/shti250878","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5041890943","display_name":"Anna Vahteristo","orcid":"https://orcid.org/0000-0001-9427-8254"},"institutions":[{"id":"https://openalex.org/I175532246","display_name":"University of Eastern Finland","ror":"https://ror.org/00cyydd11","country_code":"FI","type":"education","lineage":["https://openalex.org/I175532246"]},{"id":"https://openalex.org/I4210107997","display_name":"Finland University","ror":"https://ror.org/014rks409","country_code":"FI","type":"education","lineage":["https://openalex.org/I4210107997"]}],"countries":["FI"],"is_corresponding":true,"raw_author_name":"Anna Vahteristo","raw_affiliation_strings":["Department of Health and Social Management, University of Eastern Finland, Finland"],"raw_orcid":"https://orcid.org/0000-0001-9427-8254","affiliations":[{"raw_affiliation_string":"Department of Health and Social Management, University of Eastern Finland, Finland","institution_ids":["https://openalex.org/I4210107997","https://openalex.org/I175532246"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5085451188","display_name":"Milla Rosenlund","orcid":"https://orcid.org/0000-0001-9867-2347"},"institutions":[{"id":"https://openalex.org/I175532246","display_name":"University of Eastern Finland","ror":"https://ror.org/00cyydd11","country_code":"FI","type":"education","lineage":["https://openalex.org/I175532246"]},{"id":"https://openalex.org/I4210107997","display_name":"Finland University","ror":"https://ror.org/014rks409","country_code":"FI","type":"education","lineage":["https://openalex.org/I4210107997"]}],"countries":["FI"],"is_corresponding":false,"raw_author_name":"Milla Rosenlund","raw_affiliation_strings":["Department of Health and Social Management, University of Eastern Finland, Finland"],"raw_orcid":"https://orcid.org/0000-0001-9867-2347","affiliations":[{"raw_affiliation_string":"Department of Health and Social Management, University of Eastern Finland, Finland","institution_ids":["https://openalex.org/I4210107997","https://openalex.org/I175532246"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5098878070","display_name":"Niina Reinikainen","orcid":"https://orcid.org/0009-0006-2451-0293"},"institutions":[{"id":"https://openalex.org/I175532246","display_name":"University of Eastern Finland","ror":"https://ror.org/00cyydd11","country_code":"FI","type":"education","lineage":["https://openalex.org/I175532246"]},{"id":"https://openalex.org/I4210107997","display_name":"Finland University","ror":"https://ror.org/014rks409","country_code":"FI","type":"education","lineage":["https://openalex.org/I4210107997"]}],"countries":["FI"],"is_corresponding":false,"raw_author_name":"Niina Reinikainen","raw_affiliation_strings":["Department of Health and Social Management, University of Eastern Finland, Finland"],"raw_orcid":"https://orcid.org/0009-0006-2451-0293","affiliations":[{"raw_affiliation_string":"Department of Health and Social Management, University of Eastern Finland, Finland","institution_ids":["https://openalex.org/I4210107997","https://openalex.org/I175532246"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5047968518","display_name":"Virpi Jylh\u00e4","orcid":"https://orcid.org/0000-0002-0725-1414"},"institutions":[{"id":"https://openalex.org/I175532246","display_name":"University of Eastern Finland","ror":"https://ror.org/00cyydd11","country_code":"FI","type":"education","lineage":["https://openalex.org/I175532246"]},{"id":"https://openalex.org/I4210092991","display_name":"Kuopio University Hospital","ror":"https://ror.org/00fqdfs68","country_code":"FI","type":"healthcare","lineage":["https://openalex.org/I4210092991"]},{"id":"https://openalex.org/I4210107997","display_name":"Finland University","ror":"https://ror.org/014rks409","country_code":"FI","type":"education","lineage":["https://openalex.org/I4210107997"]}],"countries":["FI"],"is_corresponding":false,"raw_author_name":"Virpi Jylh\u00e4","raw_affiliation_strings":["Department of Health and Social Management, University of Eastern Finland, Finland","Research Centre for Nursing Science and Social and Health Management, Kuopio University Hospital, Wellbeing Services County of North Savo, Finland"],"raw_orcid":"https://orcid.org/0000-0002-0725-1414","affiliations":[{"raw_affiliation_string":"Department of Health and Social Management, University of Eastern Finland, Finland","institution_ids":["https://openalex.org/I4210107997","https://openalex.org/I175532246"]},{"raw_affiliation_string":"Research Centre for Nursing Science and Social and Health Management, Kuopio University Hospital, Wellbeing Services County of North Savo, Finland","institution_ids":["https://openalex.org/I4210092991"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5038130472","display_name":"Hanna Kuusisto","orcid":"https://orcid.org/0000-0002-3697-4961"},"institutions":[{"id":"https://openalex.org/I175532246","display_name":"University of Eastern Finland","ror":"https://ror.org/00cyydd11","country_code":"FI","type":"education","lineage":["https://openalex.org/I175532246"]},{"id":"https://openalex.org/I4210107997","display_name":"Finland University","ror":"https://ror.org/014rks409","country_code":"FI","type":"education","lineage":["https://openalex.org/I4210107997"]},{"id":"https://openalex.org/I4210126318","display_name":"Tampere University Hospital","ror":"https://ror.org/02hvt5f17","country_code":"FI","type":"healthcare","lineage":["https://openalex.org/I4210126318"]},{"id":"https://openalex.org/I4210133110","display_name":"Tampere University","ror":null,"country_code":"FI","type":null,"lineage":["https://openalex.org/I4210133110"]}],"countries":["FI"],"is_corresponding":false,"raw_author_name":"Hanna Kuusisto","raw_affiliation_strings":["Department of Health and Social Management, University of Eastern Finland, Finland","Tampere University Hospital, Finland"],"raw_orcid":"https://orcid.org/0000-0002-3697-4961","affiliations":[{"raw_affiliation_string":"Department of Health and Social Management, University of Eastern Finland, Finland","institution_ids":["https://openalex.org/I4210107997","https://openalex.org/I175532246"]},{"raw_affiliation_string":"Tampere University Hospital, Finland","institution_ids":["https://openalex.org/I4210133110","https://openalex.org/I4210126318"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":5,"corresponding_author_ids":["https://openalex.org/A5041890943"],"corresponding_institution_ids":["https://openalex.org/I175532246","https://openalex.org/I4210107997"],"apc_list":null,"apc_paid":null,"fwci":0.0,"has_fulltext":false,"cited_by_count":0,"citation_normalized_percentile":{"value":0.48411798,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":null,"biblio":{"volume":"329","issue":null,"first_page":"440","last_page":"444"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10827","display_name":"Patient-Provider Communication in Healthcare","score":0.9970999956130981,"subfield":{"id":"https://openalex.org/subfields/3600","display_name":"General Health Professions"},"field":{"id":"https://openalex.org/fields/36","display_name":"Health Professions"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T10827","display_name":"Patient-Provider Communication in Healthcare","score":0.9970999956130981,"subfield":{"id":"https://openalex.org/subfields/3600","display_name":"General Health Professions"},"field":{"id":"https://openalex.org/fields/36","display_name":"Health Professions"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T10177","display_name":"Palliative Care and End-of-Life Issues","score":0.9623000025749207,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational Health"},"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/T13574","display_name":"Family Support in Illness","score":0.9610999822616577,"subfield":{"id":"https://openalex.org/subfields/3312","display_name":"Sociology and Political Science"},"field":{"id":"https://openalex.org/fields/33","display_name":"Social Sciences"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/preference","display_name":"Preference","score":0.6191126108169556},{"id":"https://openalex.org/keywords/empowerment","display_name":"Empowerment","score":0.4978053569793701},{"id":"https://openalex.org/keywords/epilepsy","display_name":"Epilepsy","score":0.45892006158828735},{"id":"https://openalex.org/keywords/health-care","display_name":"Health care","score":0.4368005692958832},{"id":"https://openalex.org/keywords/data-science","display_name":"Data science","score":0.4306890666484833},{"id":"https://openalex.org/keywords/health-professionals","display_name":"Health professionals","score":0.42852485179901123},{"id":"https://openalex.org/keywords/knowledge-management","display_name":"Knowledge management","score":0.4224255383014679},{"id":"https://openalex.org/keywords/psychology","display_name":"Psychology","score":0.4151718318462372},{"id":"https://openalex.org/keywords/computer-science","display_name":"Computer science","score":0.3853026032447815},{"id":"https://openalex.org/keywords/psychiatry","display_name":"Psychiatry","score":0.13749119639396667}],"concepts":[{"id":"https://openalex.org/C2781249084","wikidata":"https://www.wikidata.org/wiki/Q908656","display_name":"Preference","level":2,"score":0.6191126108169556},{"id":"https://openalex.org/C20555606","wikidata":"https://www.wikidata.org/wiki/Q868575","display_name":"Empowerment","level":2,"score":0.4978053569793701},{"id":"https://openalex.org/C2778186239","wikidata":"https://www.wikidata.org/wiki/Q41571","display_name":"Epilepsy","level":2,"score":0.45892006158828735},{"id":"https://openalex.org/C160735492","wikidata":"https://www.wikidata.org/wiki/Q31207","display_name":"Health care","level":2,"score":0.4368005692958832},{"id":"https://openalex.org/C2522767166","wikidata":"https://www.wikidata.org/wiki/Q2374463","display_name":"Data science","level":1,"score":0.4306890666484833},{"id":"https://openalex.org/C3019806175","wikidata":"https://www.wikidata.org/wiki/Q11974939","display_name":"Health professionals","level":3,"score":0.42852485179901123},{"id":"https://openalex.org/C56739046","wikidata":"https://www.wikidata.org/wiki/Q192060","display_name":"Knowledge management","level":1,"score":0.4224255383014679},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.4151718318462372},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.3853026032447815},{"id":"https://openalex.org/C118552586","wikidata":"https://www.wikidata.org/wiki/Q7867","display_name":"Psychiatry","level":1,"score":0.13749119639396667},{"id":"https://openalex.org/C50522688","wikidata":"https://www.wikidata.org/wiki/Q189833","display_name":"Economic growth","level":1,"score":0.0},{"id":"https://openalex.org/C199539241","wikidata":"https://www.wikidata.org/wiki/Q7748","display_name":"Law","level":1,"score":0.0},{"id":"https://openalex.org/C175444787","wikidata":"https://www.wikidata.org/wiki/Q39072","display_name":"Microeconomics","level":1,"score":0.0},{"id":"https://openalex.org/C162324750","wikidata":"https://www.wikidata.org/wiki/Q8134","display_name":"Economics","level":0,"score":0.0},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.0}],"mesh":[{"descriptor_ui":"D000076206","descriptor_name":"Patient Generated Health Data","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D000076206","descriptor_name":"Patient Generated Health Data","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D000080536","descriptor_name":"Decision Making, Shared","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D000080536","descriptor_name":"Decision Making, Shared","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D004827","descriptor_name":"Epilepsy","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D004827","descriptor_name":"Epilepsy","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D005260","descriptor_name":"Female","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005260","descriptor_name":"Female","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D008297","descriptor_name":"Male","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D008297","descriptor_name":"Male","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D009103","descriptor_name":"Multiple Sclerosis","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D009103","descriptor_name":"Multiple Sclerosis","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D010358","descriptor_name":"Patient Participation","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D010358","descriptor_name":"Patient Participation","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D057240","descriptor_name":"Patient Preference","qualifier_ui":"Q000706","qualifier_name":"statistics & numerical data","is_major_topic":true},{"descriptor_ui":"D057240","descriptor_name":"Patient Preference","qualifier_ui":"Q000706","qualifier_name":"statistics & numerical data","is_major_topic":true}],"locations_count":3,"locations":[{"id":"doi:10.3233/shti250878","is_oa":true,"landing_page_url":"https://doi.org/10.3233/shti250878","pdf_url":null,"source":{"id":"https://openalex.org/S4210179765","display_name":"Studies in health technology and informatics","issn_l":"0926-9630","issn":["0926-9630","1879-8365"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310318577","host_organization_name":"IOS Press","host_organization_lineage":["https://openalex.org/P4310318577"],"host_organization_lineage_names":["IOS Press"],"type":"book series"},"license":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Studies in Health Technology and Informatics","raw_type":"book-chapter"},{"id":"pmid:40775896","is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/40775896","pdf_url":null,"source":{"id":"https://openalex.org/S4306525036","display_name":"PubMed","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Studies in health technology and informatics","raw_type":null},{"id":"pmh:oai:trepo.tuni.fi:10024/232531","is_oa":true,"landing_page_url":"https://trepo.tuni.fi/handle/10024/232531","pdf_url":null,"source":{"id":"https://openalex.org/S7407055260","display_name":"Trepo - Institutional Repository of Tampere University","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"conference"}],"best_oa_location":{"id":"doi:10.3233/shti250878","is_oa":true,"landing_page_url":"https://doi.org/10.3233/shti250878","pdf_url":null,"source":{"id":"https://openalex.org/S4210179765","display_name":"Studies in health technology and informatics","issn_l":"0926-9630","issn":["0926-9630","1879-8365"],"is_oa":false,"is_in_doaj":false,"is_core":true,"host_organization":"https://openalex.org/P4310318577","host_organization_name":"IOS Press","host_organization_lineage":["https://openalex.org/P4310318577"],"host_organization_lineage_names":["IOS Press"],"type":"book series"},"license":"cc-by-nc","license_id":"https://openalex.org/licenses/cc-by-nc","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Studies in Health Technology and Informatics","raw_type":"book-chapter"},"sustainable_development_goals":[{"score":0.7099999785423279,"id":"https://metadata.un.org/sdg/16","display_name":"Peace, Justice and strong institutions"}],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W2395385109","https://openalex.org/W2773633178","https://openalex.org/W2080101436","https://openalex.org/W2802335767","https://openalex.org/W2356350882","https://openalex.org/W4388090985","https://openalex.org/W1545074592","https://openalex.org/W2275559830","https://openalex.org/W351867064","https://openalex.org/W2417785652"],"abstract_inverted_index":{"Patient-generated":[0],"health":[1,41,126],"data":[2,6,121],"(PGHD)":[3],"refers":[4],"to":[5,64,85,101,119],"generated":[7],"by":[8,78,147],"or":[9,75],"from":[10],"patients.":[11],"Most":[12],"often,":[13],"PGHD":[14,25,69,80,100,133],"is":[15,22,26,48],"verbal":[16],"and":[17,36,59,83,145],"written,":[18],"but":[19,136],"today,":[20],"it":[21],"increasingly":[23],"digital.":[24],"considered":[27],"crucial":[28],"in":[29,40,51,104,140],"shared":[30,82,87],"decision-making":[31,105],"(SDM),":[32],"fostering":[33],"patient":[34],"empowerment":[35],"patients'":[37],"active":[38],"participation":[39],"management.":[42],"Studies":[43],"have":[44],"shown":[45],"that":[46,94,113],"SDM":[47,141],"especially":[49],"valuable":[50],"preference-sensitive":[52],"conditions":[53],"such":[54],"as":[55],"multiple":[56],"sclerosis":[57],"(MS)":[58],"epilepsy.":[60],"This":[61],"study":[62],"aimed":[63],"enhance":[65],"the":[66,107,117,130],"understanding":[67],"of":[68,99,124,132],"elements":[70],"among":[71],"people":[72],"with":[73,88],"epilepsy":[74],"MS":[76],"(pwE/MS)":[77],"investigating":[79],"currently":[81],"wished":[84],"be":[86,102],"healthcare":[89],"professionals":[90],"(HCPs).":[91],"We":[92],"found":[93],"pwE/MS":[95,114],"consider":[96],"numerous":[97],"types":[98],"important":[103],"concerning":[106],"care.":[108],"However,":[109],"there":[110],"are":[111,115],"indications":[112],"lacking":[116],"possibility":[118],"transmit":[120],"digitally.":[122],"Development":[123],"digital":[125],"services":[127],"could":[128],"facilitate":[129],"integration":[131],"into":[134],"care,":[135],"its":[137],"meaningful":[138],"use":[139],"requires":[142],"greater":[143],"recognition":[144],"engagement":[146],"HCPs.":[148]},"counts_by_year":[],"updated_date":"2026-05-21T09:19:25.381259","created_date":"2025-10-10T00:00:00"}
