{"id":"https://openalex.org/W4390116985","doi":"https://doi.org/10.1002/hast.1537","title":"Big Mistake: Knowing and Doing Better in Patient Engagement","display_name":"Big Mistake: Knowing and Doing Better in Patient Engagement","publication_year":2023,"publication_date":"2023-11-01","ids":{"openalex":"https://openalex.org/W4390116985","doi":"https://doi.org/10.1002/hast.1537","pmid":"https://pubmed.ncbi.nlm.nih.gov/38131496"},"language":"en","primary_location":{"id":"doi:10.1002/hast.1537","doi":"https://doi.org/10.1002/hast.1537","is_oa":false,"landing_page_url":"http://dx.doi.org/10.1002/hast.1537","pdf_url":null,"source":{"id":"https://openalex.org/S33843192","display_name":"The Hastings Center Report","issn_l":"0093-0334","issn":["0093-0334","1552-146X"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","erih-plus","jufo-1","medline","norway-1"],"host_organization":"https://openalex.org/P4310320595","host_organization_name":"Wiley","host_organization_lineage":["https://openalex.org/P4310320595"],"host_organization_lineage_names":["Wiley"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Hastings Center Report","raw_type":"journal-article"},"volume":null,"type":"article","indexed_in":["crossref","pubmed"],"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/A5007320671","display_name":"Holly Fernandez Lynch","orcid":"https://orcid.org/0000-0001-7813-9879","observed_orcids":["https://orcid.org/0000-0001-7813-9879"]},"institutions":[],"countries":[],"is_corresponding":true,"raw_author_name":"Holly Fernandez Lynch","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]}],"institutions":[],"countries_distinct_count":0,"institutions_distinct_count":0,"corresponding_author_ids":["https://openalex.org/A5007320671"],"corresponding_institution_ids":[],"apc_list":{"value":3240,"currency":"USD","value_usd":3240},"apc_paid":null,"fwci":0.2334,"has_fulltext":false,"cited_by_count":1,"citation_normalized_percentile":{"value":0.5935178,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":89,"max":94},"biblio":{"volume":"53","issue":"6","first_page":"2","last_page":"2"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T13147","display_name":"Ethics and bioethics in healthcare","score":0.5253999829292297,"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"}},"topics":[{"id":"https://openalex.org/T13147","display_name":"Ethics and bioethics in healthcare","score":0.5253999829292297,"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/T10177","display_name":"Palliative Care and End-of-Life Issues","score":0.19850000739097595,"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/T11639","display_name":"Mental Health and Patient Involvement","score":0.17000000178813934,"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"}}],"keywords":[{"id":"https://openalex.org/keywords/patient-engagement","display_name":"patient engagement","score":0.968999981880188},{"id":"https://openalex.org/keywords/bioethics","display_name":"bioethics","score":0.8479999899864197},{"id":"https://openalex.org/keywords/amyotrophic-lateral-sclerosis","display_name":"amyotrophic lateral sclerosis","score":0.9629999995231628},{"id":"https://openalex.org/keywords/patient-advocacy","display_name":"patient advocacy","score":0.5830000042915344},{"id":"https://openalex.org/keywords/social-media","display_name":"social media","score":0.5680000185966492},{"id":"https://openalex.org/keywords/bidirectional-learning","display_name":"bidirectional learning","score":0.7900000214576721},{"id":"https://openalex.org/keywords/patient-expertise","display_name":"patient expertise","score":0.3930000066757202},{"id":"https://openalex.org/keywords/clinician-patient-relationship","display_name":"clinician-patient relationship","score":0.5580000281333923}],"concepts":[{"id":"https://openalex.org/C2778833722","wikidata":"https://www.wikidata.org/wiki/Q28457372","display_name":"Tact","level":2,"score":0.7153869271278381},{"id":"https://openalex.org/C2777179996","wikidata":"https://www.wikidata.org/wiki/Q911222","display_name":"Mistake","level":2,"score":0.7035894393920898},{"id":"https://openalex.org/C188084074","wikidata":"https://www.wikidata.org/wiki/Q194294","display_name":"Bioethics","level":2,"score":0.6730808615684509},{"id":"https://openalex.org/C2779023502","wikidata":"https://www.wikidata.org/wiki/Q396569","display_name":"Ivory tower","level":2,"score":0.660612940788269},{"id":"https://openalex.org/C84976871","wikidata":"https://www.wikidata.org/wiki/Q2015673","display_name":"Openness to experience","level":2,"score":0.49924612045288086},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.48789355158805847},{"id":"https://openalex.org/C143273055","wikidata":"https://www.wikidata.org/wiki/Q2382794","display_name":"Delegate","level":2,"score":0.4505057632923126},{"id":"https://openalex.org/C77805123","wikidata":"https://www.wikidata.org/wiki/Q161272","display_name":"Social psychology","level":1,"score":0.3959338366985321},{"id":"https://openalex.org/C144024400","wikidata":"https://www.wikidata.org/wiki/Q21201","display_name":"Sociology","level":0,"score":0.37143760919570923},{"id":"https://openalex.org/C39549134","wikidata":"https://www.wikidata.org/wiki/Q133080","display_name":"Public relations","level":1,"score":0.35990095138549805},{"id":"https://openalex.org/C199539241","wikidata":"https://www.wikidata.org/wiki/Q7748","display_name":"Law","level":1,"score":0.2518346905708313},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","level":0,"score":0.2173229157924652},{"id":"https://openalex.org/C542102704","wikidata":"https://www.wikidata.org/wiki/Q183257","display_name":"Psychotherapist","level":1,"score":0.20504364371299744},{"id":"https://openalex.org/C199360897","wikidata":"https://www.wikidata.org/wiki/Q9143","display_name":"Programming language","level":1,"score":0.0},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.0}],"mesh":[{"descriptor_ui":"D000690","descriptor_name":"Amyotrophic Lateral Sclerosis","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D000690","descriptor_name":"Amyotrophic Lateral Sclerosis","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D000690","descriptor_name":"Amyotrophic Lateral Sclerosis","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D000690","descriptor_name":"Amyotrophic Lateral Sclerosis","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D001675","descriptor_name":"Bioethics","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D001675","descriptor_name":"Bioethics","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D001675","descriptor_name":"Bioethics","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D001675","descriptor_name":"Bioethics","qualifier_ui":null,"qualifier_name":null,"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":"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":"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":"D010358","descriptor_name":"Patient Participation","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D010358","descriptor_name":"Patient Participation","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D010358","descriptor_name":"Patient Participation","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D010358","descriptor_name":"Patient Participation","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D026822","descriptor_name":"Ethicists","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D026822","descriptor_name":"Ethicists","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D026822","descriptor_name":"Ethicists","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D026822","descriptor_name":"Ethicists","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D034462","descriptor_name":"Dissent and Disputes","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D034462","descriptor_name":"Dissent and Disputes","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D034462","descriptor_name":"Dissent and Disputes","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D034462","descriptor_name":"Dissent and Disputes","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false}],"locations_count":3,"locations":[{"id":"doi:10.1002/hast.1537","doi":"https://doi.org/10.1002/hast.1537","is_oa":false,"landing_page_url":"http://dx.doi.org/10.1002/hast.1537","pdf_url":null,"source":{"id":"https://openalex.org/S33843192","display_name":"The Hastings Center Report","issn_l":"0093-0334","issn":["0093-0334","1552-146X"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","erih-plus","jufo-1","medline","norway-1"],"host_organization":"https://openalex.org/P4310320595","host_organization_name":"Wiley","host_organization_lineage":["https://openalex.org/P4310320595"],"host_organization_lineage_names":["Wiley"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Hastings Center Report","raw_type":"journal-article"},{"id":"pmid:38131496","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/38131496","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,"listed_in":[],"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":"The Hastings Center report","raw_type":"Journal Article"},{"id":"pmh:oai:scholarship.law.upenn.edu:faculty_articles-1307","doi":null,"is_oa":false,"landing_page_url":"https://scholarship.law.upenn.edu/faculty_articles/315","pdf_url":null,"source":{"id":"https://openalex.org/S4377196469","display_name":"Penn Carey Law Legal Scholarship Repository (University of Pennsylvania)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I79576946","host_organization_name":"University of Pennsylvania","host_organization_lineage":["https://openalex.org/I79576946"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Articles","raw_type":"text"}],"best_oa_location":null,"sustainable_development_goals":[{"display_name":"Good health and well-being","id":"https://metadata.un.org/sdg/3","score":0.5683000087738037}],"sustainable_development_goals_aurora":[],"study_designs":[],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W2067695523","https://openalex.org/W325698339","https://openalex.org/W2311375138","https://openalex.org/W2238176571","https://openalex.org/W2587815166","https://openalex.org/W2241513875","https://openalex.org/W1599691175","https://openalex.org/W2062900861","https://openalex.org/W2113388068","https://openalex.org/W2363108824"],"abstract_inverted_index":{"Pushing":[0],"back":[1],"on":[2],"policies":[3],"favored":[4],"by":[5],"dying":[6],"patients":[7,81,96],"is":[8,91],"a":[9,55,66],"challenging":[10],"endeavor,":[11],"requiring":[12],"tact,":[13],"engagement,":[14],"openness":[15],"to":[16,21,27,103],"bidirectional":[17],"learning,":[18],"and":[19,45,62,95],"willingness":[20],"offer":[22],"alternative":[23],"solutions.":[24],"It's":[25],"easy":[26],"make":[28],"missteps,":[29],"especially":[30],"in":[31],"the":[32,47,78,98],"age":[33],"of":[34,57],"social":[35],"media.":[36],"Holly":[37],"Fernandez":[38],"Lynch":[39],"shares":[40],"her":[41],"experience":[42],"learning":[43],"with":[44],"from":[46],"amyotrophic":[48],"lateral":[49],"sclerosis":[50],"(ALS)":[51],"community,":[52],"first":[53],"as":[54,65],"caricature":[56],"an":[58],"ivory":[59],"tower":[60],"bioethicist":[61],"more":[63],"recently":[64],"trusted":[67],"advisor,":[68],"at":[69],"least":[70],"for":[71],"some.":[72],"Patient-engaged":[73],"bioethics":[74],"doesn't":[75],"mean":[76],"taking":[77],"view":[79],"that":[80],"are":[82],"always":[83],"right,":[84],"but":[85],"even":[86],"when":[87],"disagreement":[88],"continues,":[89],"progress":[90],"possible":[92],"if":[93],"academics":[94],"recognize":[97],"unique":[99],"expertise":[100],"each":[101],"has":[102],"offer.":[104]},"counts_by_year":[{"year":2024,"cited_by_count":1}],"updated_date":"2026-08-28T12:50:07.497085","created_date":"2025-10-10T00:00:00"}