Barriers, facilitators, and recommendations for sexual orientation and gender identity data collection in community oncology practices
Abstract Background Sexual orientation and gender identity (SOGI) data collection in community oncology practices is critical to identify and address cancer inequities, but less than 20% of NCI Community Oncology Research Program (NCORP)‐affiliated practices regularly collect SOGI data despite wides...
| Main Authors: | , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Wiley
2023-09-01
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| Series: | Cancer Medicine |
| Subjects: | |
| Online Access: | https://doi.org/10.1002/cam4.6517 |
| _version_ | 1797361277789536256 |
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| author | Megan A. Mullins Lisa Reber Ariel Washington Marina Stasenko Aaron Rankin Christopher R. Friese Mary E. Cooley Matthew F. Hudson Lauren P. Wallner |
| author_facet | Megan A. Mullins Lisa Reber Ariel Washington Marina Stasenko Aaron Rankin Christopher R. Friese Mary E. Cooley Matthew F. Hudson Lauren P. Wallner |
| author_sort | Megan A. Mullins |
| collection | DOAJ |
| description | Abstract Background Sexual orientation and gender identity (SOGI) data collection in community oncology practices is critical to identify and address cancer inequities, but less than 20% of NCI Community Oncology Research Program (NCORP)‐affiliated practices regularly collect SOGI data despite widespread recommendations. We evaluated multilevel barriers and facilitators for SOGI data collection at NCORP practices. Methods We conducted 14 semi‐structured interviews at seven purposefully sampled NCORP oncology practices. We interviewed one clinician (oncologist, advanced practice provider) and one clinic staff member per practice. Thematic analysis informed by the Consolidated Framework for Implementation Research (CFIR) was conducted to identify barriers and facilitators. Results Thematic saturation occurred after interviews at six practices and was confirmed with interviews at an additional practice. Participants highlighted multilevel barriers including low levels of understanding, information technology infrastructure, and perceived low relative priority. Not understanding the role of SOGI data in oncology care contributed to cis‐heteronormative culture. At the clinic level, this culture coincided with a lack of processes and policies for collecting SOGI from all patients. At the care team level, perceived irrelevance to oncology care was related to discomfort asking SOGI, fear of patient discomfort, and limited awareness of SOGI in electronic health records. Suggested solutions included: normalizing asking SOGI questions, giving patients privacy to complete SOGI, and clarifying clinical relevance. Conclusions SOGI data collection barriers stemmed from perceptions that SOGI disclosure does not influence care quality. Oncology teams may benefit from training on culturally sensitive SOGI collection, education on SOGI data relevance to oncology practices, and support for implementing SOGI data collection policies. |
| first_indexed | 2024-03-08T15:51:33Z |
| format | Article |
| id | doaj.art-41c4bd817aab42849b1e725470b8d29a |
| institution | Directory Open Access Journal |
| issn | 2045-7634 |
| language | English |
| last_indexed | 2024-03-08T15:51:33Z |
| publishDate | 2023-09-01 |
| publisher | Wiley |
| record_format | Article |
| series | Cancer Medicine |
| spelling | doaj.art-41c4bd817aab42849b1e725470b8d29a2024-01-09T05:21:16ZengWileyCancer Medicine2045-76342023-09-011218192031921410.1002/cam4.6517Barriers, facilitators, and recommendations for sexual orientation and gender identity data collection in community oncology practicesMegan A. Mullins0Lisa Reber1Ariel Washington2Marina Stasenko3Aaron Rankin4Christopher R. Friese5Mary E. Cooley6Matthew F. Hudson7Lauren P. Wallner8Peter O'Donnell Jr. School of Public Health UT Southwestern Medical Center Dallas Texas USAPeter O'Donnell Jr. School of Public Health UT Southwestern Medical Center Dallas Texas USAKarmanos Cancer Institute, Department of Oncology Wayne State University School of Medicine Detroit Michigan USADivision of Gynecologic Oncology, Department of Obstetrics and Gynecology NYU Langone Health New York New York USADepartment of Internal Medicine University of Michigan Ann Arbor Michigan USACenter for Improving Patient and Population Health University of Michigan Ann Arbor Michigan USAPhyllis F. Cantor Center, Research in Nursing and Patient Care Services Dana‐Farber Cancer Institute Boston Massachusetts USAPrisma Health Cancer Institute Greenville South Carolina Greenville South Carolina USADepartment of Internal Medicine University of Michigan Ann Arbor Michigan USAAbstract Background Sexual orientation and gender identity (SOGI) data collection in community oncology practices is critical to identify and address cancer inequities, but less than 20% of NCI Community Oncology Research Program (NCORP)‐affiliated practices regularly collect SOGI data despite widespread recommendations. We evaluated multilevel barriers and facilitators for SOGI data collection at NCORP practices. Methods We conducted 14 semi‐structured interviews at seven purposefully sampled NCORP oncology practices. We interviewed one clinician (oncologist, advanced practice provider) and one clinic staff member per practice. Thematic analysis informed by the Consolidated Framework for Implementation Research (CFIR) was conducted to identify barriers and facilitators. Results Thematic saturation occurred after interviews at six practices and was confirmed with interviews at an additional practice. Participants highlighted multilevel barriers including low levels of understanding, information technology infrastructure, and perceived low relative priority. Not understanding the role of SOGI data in oncology care contributed to cis‐heteronormative culture. At the clinic level, this culture coincided with a lack of processes and policies for collecting SOGI from all patients. At the care team level, perceived irrelevance to oncology care was related to discomfort asking SOGI, fear of patient discomfort, and limited awareness of SOGI in electronic health records. Suggested solutions included: normalizing asking SOGI questions, giving patients privacy to complete SOGI, and clarifying clinical relevance. Conclusions SOGI data collection barriers stemmed from perceptions that SOGI disclosure does not influence care quality. Oncology teams may benefit from training on culturally sensitive SOGI collection, education on SOGI data relevance to oncology practices, and support for implementing SOGI data collection policies.https://doi.org/10.1002/cam4.6517clinical cancer researchclinical guidelinesepidemiologypsychosocial studies |
| spellingShingle | Megan A. Mullins Lisa Reber Ariel Washington Marina Stasenko Aaron Rankin Christopher R. Friese Mary E. Cooley Matthew F. Hudson Lauren P. Wallner Barriers, facilitators, and recommendations for sexual orientation and gender identity data collection in community oncology practices Cancer Medicine clinical cancer research clinical guidelines epidemiology psychosocial studies |
| title | Barriers, facilitators, and recommendations for sexual orientation and gender identity data collection in community oncology practices |
| title_full | Barriers, facilitators, and recommendations for sexual orientation and gender identity data collection in community oncology practices |
| title_fullStr | Barriers, facilitators, and recommendations for sexual orientation and gender identity data collection in community oncology practices |
| title_full_unstemmed | Barriers, facilitators, and recommendations for sexual orientation and gender identity data collection in community oncology practices |
| title_short | Barriers, facilitators, and recommendations for sexual orientation and gender identity data collection in community oncology practices |
| title_sort | barriers facilitators and recommendations for sexual orientation and gender identity data collection in community oncology practices |
| topic | clinical cancer research clinical guidelines epidemiology psychosocial studies |
| url | https://doi.org/10.1002/cam4.6517 |
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