{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,27]],"date-time":"2026-06-27T21:19:44Z","timestamp":1782595184340,"version":"3.54.5"},"reference-count":33,"publisher":"SAGE Publications","issue":"6","license":[{"start":{"date-parts":[[2025,6,1]],"date-time":"2025-06-01T00:00:00Z","timestamp":1748736000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Palliative Medicine"],"published-print":{"date-parts":[[2025,6]]},"abstract":"<jats:p>\n                    The disproportionate impact of the COVID-19 pandemic on marginalized communities due to structural racism has led to an increased focus on diversity, equity, and inclusion in medical literature. To assess pre-pandemic racial and ethnic representation among subjects in palliative care research, we examined the reporting of race and ethnicity in research presented at the American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association State of the Science (SOS) plenary (2004\u20132019), as these articles frequently influence patient care and clinical practice. There were 126 articles identified and 88 met inclusion criteria. Among the eligible articles reviewed, there were 48 unique racial and ethnic categories. The most common groups specified were White (\n                    <jats:italic toggle=\"yes\">N<\/jats:italic>\n                    = 77), Black (\n                    <jats:italic toggle=\"yes\">N<\/jats:italic>\n                    = 52), and Hispanic\/Latino (\n                    <jats:italic toggle=\"yes\">N<\/jats:italic>\n                    = 36). More than two-thirds of the articles (\n                    <jats:italic toggle=\"yes\">n<\/jats:italic>\n                    = 60, 68.1%) specified at least one nonstandard race or ethnic category not among those recommended by the U.S. Office of Management and Budget. Over half of articles (\n                    <jats:italic toggle=\"yes\">n<\/jats:italic>\n                    = 53, 60.2%) combined minoritized groups into a nonspecific category (e.g., \u201cother\u201d), and 30 (34.1%) articles specified White populations alone or White populations with a nonspecific category for other groups. Seventeen (19.3%) articles included over 90% White participants, and only 3 (3.4%) articles had a minority health or health disparity focus. In this review of high impact, practice changing articles, the lack of appropriate representation of minoritized racial and ethnic groups, frequent use of non-standard categories to describe race and ethnicity, and the small number of articles focused on health disparities raise concerns about the generalizability of research findings, equity in research processes, and attention to populations that experience disparities in palliative care outcomes. There are substantial opportunities for investigators to adopt equitable practices that increase the inclusion of persons of diverse racial and ethnic backgrounds in research.\n                  <\/jats:p>","DOI":"10.1089\/jpm.2023.0694","type":"journal-article","created":{"date-parts":[[2025,5,26]],"date-time":"2025-05-26T06:44:31Z","timestamp":1748241871000},"page":"708-715","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":5,"title":["Evaluation of Reporting of Race and Ethnicity in Hospice and Palliative Care Research"],"prefix":"10.1177","volume":"28","author":[{"given":"Kimberly S.","family":"Johnson","sequence":"first","affiliation":[{"name":"Division of Geriatrics, Department of Medicine, Duke University School of Medicine, Durham, North Carolina, USA."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karen","family":"Bullock","sequence":"additional","affiliation":[{"name":"School of Social Work, Boston College, Chestnut Hill, Massachusetts, USA."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3635-8701","authenticated-orcid":false,"given":"Cardinale B.","family":"Smith","sequence":"additional","affiliation":[{"name":"Division of Hematology\/Medical Oncology, Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, New York, USA."},{"name":"Brookdale Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, New York, USA."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Deborah B.","family":"Ejem","sequence":"additional","affiliation":[{"name":"School of Nursing, University of Alabama at Birmingham, Birmingham, Alabama, USA."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nadine J.","family":"Barrett","sequence":"additional","affiliation":[{"name":"Department of Family Medicine and Community Health, Duke University School of Medicine, Durham, North Carolina, USA."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"A\u2019mie","family":"Preston","sequence":"additional","affiliation":[{"name":"Central Arkansas Veterans Healthcare System, Little Rock, Arkansas, USA."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kenisha","family":"Bethea","sequence":"additional","affiliation":[{"name":"Duke Clinical &amp; Translational Science Institute, Durham, North Carolina, USA."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marisette","family":"Hasan","sequence":"additional","affiliation":[{"name":"Health Sciences Health Innovation Group, The South Carolina Coalition for the Care of the Seriously Ill, Columbia, South Carolina, USA."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ramona L.","family":"Rhodes","sequence":"additional","affiliation":[{"name":"Central Arkansas Veterans Healthcare System, Little Rock, Arkansas, USA."},{"name":"Department of Internal Medicine, Division of Geriatric Medicine, UT Southwestern Medical Center, Dallas, Texas, USA."},{"name":"Peter O\u2019Donnell Jr. School of Public Health, UT Southwestern Medical Center, Dallas, Texas, USA."},{"name":"Simmons Comprehensive Cancer Center, UT Southwestern Medical Center, Dallas, Texas, USA."}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2025,6,16]]},"reference":[{"key":"e_1_3_4_2_2","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2016.16840"},{"key":"e_1_3_4_3_2","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2016.0330"},{"key":"e_1_3_4_4_2","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa1000678"},{"key":"e_1_3_4_5_2","unstructured":"The Evidence for High-Quality Palliative Care. 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The National Institutes of Health Office of Research on Women\u2019s Health; 2023. Available from: https:\/\/orwh.od.nih.gov\/toolkit\/other-relevant-federal-policies\/OMB-standards"},{"key":"e_1_3_4_21_2","unstructured":"Rockey S. Reporting to NIH on Race and Ethnicity of Clinical Research Participants: National Institutes of Health Office of Extramural Research; 2013. Available from: https:\/\/nexus.od.nih.gov\/all\/2013\/08\/21\/reporting-to-nih-on-race-and-ethnicity-of-clinical-research-participants\/#comments"},{"key":"e_1_3_4_22_2","doi-asserted-by":"publisher","DOI":"10.1080\/09540121.2017.1308463"},{"key":"e_1_3_4_23_2","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2007.64"},{"key":"e_1_3_4_24_2","doi-asserted-by":"publisher","DOI":"10.1001\/jamainternmed.2013.903"},{"key":"e_1_3_4_25_2","unstructured":"Race and National Origin: General Guidance. National Institutes of Health; 2024. Available from: https:\/\/www.nih.gov\/nih-style-guide\/race-national-origin"},{"key":"e_1_3_4_26_2","unstructured":"Revisions to OMB\u2019s Statistical Policy Directive No. 15: Standards for Maintaining Collecting and Presenting Federal Data on Race and Ethnicity: A Notice by the Management and Budget Office on 3\/29\/2024. The Federal Register: The Daily Journal of the United States Government: National Archives and Records Administration; 2024. Available from: https:\/\/www.federalregister.gov\/documents\/2024\/03\/29\/2024-06469\/revisions-to-ombs-statistical-policy-directive-no-15-standards-for-maintaining-collecting-and"},{"key":"e_1_3_4_27_2","unstructured":"Status and Trends in the Education of Racial and Ethnic Minorities. National Center for Eduation Statistics; 2023. Available from: https:\/\/nces.ed.gov\/pubs2010\/2010015\/tables\/table_1a.asp"},{"key":"e_1_3_4_28_2","unstructured":"Horowitz JM. Americans See Advantages and Challenges in Country\u2019s Growing Racial and Ethnic Diversity. Pew Research Center; 2019. Available from: https:\/\/www.pewresearch.org\/social-trends\/2019\/05\/08\/americans-see-advantages-and-challenges-in-countrys-growing-racial-and-ethnic-diversity\/"},{"key":"e_1_3_4_29_2","volume-title":"Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups","author":"National Academies of Sciences E, and Medicine; Policy and Global Affairs; Committee on Women in Science, Engineering, and Medicine; Committee on Improving the Representation of Women and Underrepresented Minorities in Clinical Trials and Research","year":"2022","unstructured":"National Academies of Sciences E, and Medicine; Policy and Global Affairs; Committee on Women in Science, Engineering, and Medicine; Committee on Improving the Representation of Women and Underrepresented Minorities in Clinical Trials and Research. 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