This commentary demonstrates the value of exercise for individuals living with breast cancer from the patient perspective. Exercise helps patients feel better while they undergo cancer treatment and beyond. Clinicians ar...This commentary demonstrates the value of exercise for individuals living with breast cancer from the patient perspective. Exercise helps patients feel better while they undergo cancer treatment and beyond. Clinicians are urged to consider inclusion of exercise as standard of care during and after cancer treatment.
J Natl Cancer Inst Monogr
· 2025 Aug · PMID 40795918
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Little is known about how the intersections of social identities and circumstances exacerbate cigarette smoking disparities among US adults. We analyzed data from the 1995-2019 Tobacco Use Supplement to the Current Popul...Little is known about how the intersections of social identities and circumstances exacerbate cigarette smoking disparities among US adults. We analyzed data from the 1995-2019 Tobacco Use Supplement to the Current Population Survey (n = 1 496 458). Participants reported current cigarette smoking status (smoking cigarettes some days or every day vs not smoking at all) and 13 social identities (eg, race, ethnicity, Hispanic heritage) and circumstances (eg, education, marital status). We applied a statistical-learning boosting algorithm that allows interactions of these identities and circumstances to identify a minimal set of social identities and circumstances within each race/ethnicity with maximum predictive accuracy for current smoking. We then used weighted logistic regression models with interaction terms to estimate predicted marginal probabilities by 3-way combinations of these identities and circumstances. We found that social identities and circumstances used in this study predicted current cigarette smoking with varying degrees of accuracy by race/ethnicity, with highest accuracy among White adults and lowest accuracy among American Indian adults. Social identities and circumstances associated with current cigarette smoking differed somewhat by race/ethnicity (eg, citizen status was an important variable only among Hispanic and Black/African American adults). Prevalence of current cigarette smoking varied greatly by combinations of these identities and circumstances within each race/ethnicity (eg, 73.4% among 31-45-year-old American Indian adults in the Midwest whose spouse was absent vs 6.7% among American Indian adults in the South with bachelor's degrees and >$75 000 annual household income). These findings allow tobacco control researchers and practitioners to develop and deliver tailored interventions to reduce cigarette smoking disparities.
Jones DM, Clawson AH, Jin J
… +10 more, Bullock S, Donald K, Cooper S, Miller W, Huff Davis A, Orloff M, Bryant-Moore K, Hasan A, Guy MC, Fagan P
J Natl Cancer Inst Monogr
· 2025 Aug · PMID 40795917
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BACKGROUND: Few studies have tested the effects of evidence-based practices on increasing smoke-free rules in the homes of Black and/or African American women who smoke cigarettes and/or little cigars or cigarillos and l...BACKGROUND: Few studies have tested the effects of evidence-based practices on increasing smoke-free rules in the homes of Black and/or African American women who smoke cigarettes and/or little cigars or cigarillos and live in rural, low-resource communities. This paper presents findings from a randomized controlled trial that tested an intervention to increase the implementation of comprehensive (cigarettes, cigars, electronic cigarettes [e-cigarettes], hookah, IQOS, pipes) and tobacco product-specific smoke-free home rules at 12-month follow-up among this group. METHODS: Participants (n = 184) received motivational counseling delivered by community health workers, carbon monoxide biofeedback, and culturally relevant health education materials at 1, 3, and 6 months (intervention) or education materials only (control). We examined changes in (1) comprehensive and (2) tobacco product-specific smoke-free home rules between baseline and 12-month follow-up by study arm using binary and multinomial logistic regression with a generalized estimating equation approach (using 2-sided statistical significance tests). RESULTS: Over time, no difference in the implementation of comprehensive smoke-free home rules was observed by study arm. The intervention group had nearly 4 times higher odds of having a complete ban on cigarette smoking and statistically significantly higher odds of having a complete ban on e-cigarette use in the home compared with the control group. CONCLUSIONS: Motivational counseling delivered by a community health worker and culturally relevant health educational materials were effective in increasing cigarette and e-cigarette smoke-free home rules among Black and/or African American women who smoke and reside in rural, low-resource communities. Our approach can inform future interventions that seek to address secondhand smoke exposure among disadvantaged groups (# NCT03476837).
J Natl Cancer Inst Monogr
· 2025 Aug · PMID 40795916
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BACKGROUND: Lung cancer incidence has been decreasing in the United States, largely due to smoking reductions. However, adenocarcinoma incidence has been relatively stable compared with other histological subtypes. Histo...BACKGROUND: Lung cancer incidence has been decreasing in the United States, largely due to smoking reductions. However, adenocarcinoma incidence has been relatively stable compared with other histological subtypes. Histology-specific lung cancer incidence varies by key sociodemographic characteristics, but trends are not well characterized. METHODS: SEER 17 registry data was used to calculate annual age-adjusted lung cancer incidence over 2000-2019 by histology stratified by individual-level sex and race/ethnicity and county-level education, poverty, or urbanicity. Histology was categorized into 4 groups: adenocarcinoma, small cell, squamous cell, and other histologies. Age-adjusted incidence rates were computed using the 2000 US Standard Population. Incidence trends were characterized using Joinpoint regression. RESULTS: For most histological subtypes, lung cancer incidence has been decreasing since 2000 in both sexes and all racial/ethnic groups, with some variations. However, lung adenocarcinoma incidence was relatively constant. Lung cancer incidence decreases with increasing education and income. It is lower in urban vs rural areas across histological subtypes, except for adenocarcinoma among females. Counties with higher education levels or lower poverty rates experienced faster declines in small cell and squamous cell lung cancer incidence in recent years. The incidence of small cell and squamous cell lung cancer has been decreasing more rapidly in urban than rural areas. CONCLUSION: Disadvantaged groups have higher lung cancer rates and slower decreases in incidence over time for most histological subtypes, resulting in widening disparities. This highlights the need for targeted tobacco and lung cancer prevention strategies to accelerate decreases in vulnerable populations.
Rose SW, Thaxton Wiggins A, Patel M
… +8 more, Liu M, van de Venne J, Kucherlapaty P, Schillo B, Ickes M, Mattingly D, Kaplan C, Rayens MK
J Natl Cancer Inst Monogr
· 2025 Aug · PMID 40795915
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BACKGROUND: Flavored tobacco products are associated with youth and young adult tobacco use and disparities by racial and ethnic minorities and those of lower socioeconomic status. METHODS: We used Truth Longitudinal Coh...BACKGROUND: Flavored tobacco products are associated with youth and young adult tobacco use and disparities by racial and ethnic minorities and those of lower socioeconomic status. METHODS: We used Truth Longitudinal Cohort of 19 341participants aged 15-21 years (9 waves, 2014-2019) examining policy exposure impacts on tobacco use. Participants' current any and menthol cigarette and/or flavored cigar use were linked to living in a jurisdiction with a flavored sales restriction and/or comprehensive smoke-free policy based on home address at wave. We estimated risk ratios using Poisson regression for any tobacco product and menthol cigarettes and/or flavored cigar use with interactions of policy and wave by race and ethnicity and financial situation. RESULTS: Policy exposure to flavored sales restrictions rose from 1% of participants at wave 1 to 13% at wave 9. Respondents in areas with flavor plus comprehensive smoke-free policy reduced tobacco use risk by 13% (adjusted relative risk [RR] = 0.87, 95% confidence interval [CI] = 0.77 to 0.99) and no flavor plus comprehensive smoke-free by 8% (adjusted RR = 0.92, 95% CI = 0.87 to 0.98) vs those in no flavor plus noncomprehensive smoke-free policies areas. There were no statistically significant relationships between policy and menthol cigarette and/or flavored cigar use, but most policies in this period exempted menthol and/or mint-flavored tobacco product from the policy thus allowing for sales of menthol cigarettes and menthol and/or mint-flavored cigars. No interactions of policy by race and ethnicity or socioeconomic status were statistically significant. CONCLUSIONS: Flavor and comprehensive smoke-free policy exposure compared with exposure to neither policy were prospectively associated with reduced any tobacco use. The impact of flavor policy exposure on any tobacco use was consistent across diverse racial and ethnic groups and socioeconomic position. As flavor policies have strengthened and spread, they have potential for reducing risk of tobacco use among youth and young adults from all populations, including those experiencing tobacco-related health disparities.
Odom DB, Edwards CR, Gomez J
… +3 more, AuYoung M, Fagan P, Social Justice Competencies Subcommittee of the Community Engagement Working Group, Health Equity Action Network
J Natl Cancer Inst Monogr
· 2025 Aug · PMID 40795914
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This paper describes the process used by the Social Justice Competencies Subcommittee to identify social justice competency domains and related constructs that inform social justice approaches to research, practice, poli...This paper describes the process used by the Social Justice Competencies Subcommittee to identify social justice competency domains and related constructs that inform social justice approaches to research, practice, policies, and government infrastructures. The Subcommittee held monthly virtual meetings from November 2023 to September 2024. A literature review was conducted to identify existing competency measures. Voting and consensus processes were used to determine the content validity of the domains and constructs. The Subcommittee identified 5 domains and 59 constructs that describe (1) internal awareness; (2) attitudes, values, and beliefs; (3) knowledge that influences a social justice orientation or action; (4) skills in practice that incite others into action; and (5) skills in practice that build strong research and practice teams to engage in social justice approaches. Endgame strategies to eliminate chronic disease and risk factor disparities require that the workforce has the competencies to execute impactful research, practice, and policies.
Levy DT, Buszkiewicz JH, Yuan Z
… +3 more, Li Y, Meza R, Fleischer NL
J Natl Cancer Inst Monogr
· 2025 Aug · PMID 40795912
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INTRODUCTION: Policy interventions to reduce racial/ethnic cigarette smoking and related health disparities are needed to improve health equity. Simulation models can be useful in gauging the impact of tobacco control po...INTRODUCTION: Policy interventions to reduce racial/ethnic cigarette smoking and related health disparities are needed to improve health equity. Simulation models can be useful in gauging the impact of tobacco control policies on trends in smoking-related outcomes, but few have systematically analyzed the impact of tobacco control policies across racial/ethnic groups. METHODS: We developed 3 separate SimSmoke models for the non-Hispanic White (NHW), non-Hispanic Black (NHB), and Hispanic populations. Following a first-order Markov process, population projections evolve through net immigration and death rates, and smoking prevalence evolves through initiation, cessation, and relapse. The models incorporate policies implemented from 2011 to 2023 and are used to consider trends in NHW, NHB, and Hispanic smoking prevalence and smoking-attributable death and the impact of policies on those trends. RESULTS: The models indicate major differences in smoking trends and smoking-attributable deaths (SADs) among NHW, NHB, and Hispanic adults, with NHB males experiencing the smallest smoking decline through 2023 and having the highest 2023 smoking prevalence. The models predict major differences in the impact of tobacco control policies, especially the greater effect of cigarette taxes on NHB and Hispanic adults than NHW adults and the reduced impact of T21 laws on NHB compared to NHW and Hispanic adults. DISCUSSION: The models predict large differences in levels and rates of decline in NHW, NHB, and Hispanic smoking prevalence, leading to widening health disparities between racial/ethnic groups. Further study is needed on differential race/ethnicity impacts of tobacco control policies and the role of cigars, e-cigarettes, and other product use.
J Natl Cancer Inst Monogr
· 2025 Aug · PMID 40795911
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There is growing acknowledgment that tobacco-related health disparities and social inequities among racialized groups in the United States are linked to colonialism. Tobacco as a cash crop helped to advance colonial econ...There is growing acknowledgment that tobacco-related health disparities and social inequities among racialized groups in the United States are linked to colonialism. Tobacco as a cash crop helped to advance colonial economic and political wealth and control through the exploitation of people of African-descent and Indigenous people and their land for centuries. Few scholars have acknowledged or delineated the historical context of tobacco-related health disparities. This paper provides a brief overview of the history of commercial tobacco-related health disparities in the United States and describes how tobacco-fuel colonialism that began in the early 1600s influenced present-day patterns of the social determinants that are the foundation for health disparities. A discussion of the tobacco historical context helps us to understand generational structured and systemic inequalities and informs the type of public health, social, structural, cultural, and political actions that should be taken to end disparities among historically marginalized groups.
J Natl Cancer Inst Monogr
· 2025 Aug · PMID 40795910
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The 1998 Surgeon General's Report-Tobacco Use Among US Racial/Ethnic Minority Groups revealed a need for cessation interventions targeting the Hispanic/Latino (H/L) population. Although progress has been made in the year...The 1998 Surgeon General's Report-Tobacco Use Among US Racial/Ethnic Minority Groups revealed a need for cessation interventions targeting the Hispanic/Latino (H/L) population. Although progress has been made in the years since the report's release, H/L tobacco users continue to have limited access to cessation medication and support services. Cultural barriers and misconceptions have also complicated cessation efforts. Furthermore, the tobacco industry continues to specifically target H/L communities and youth in smoking and vaping outreach programs. Despite these challenges, some outreach and cessation efforts have shown promising results. Text- and app-based interventions and Spanish-specific educational campaigns have been uniquely effective in engaging H/L tobacco users. Policy changes and public health initiatives at the local, state, and federal level have also been helpful. The most effective approaches have common insights, including the importance of community engagement, the value of partnerships with health-care providers, and a culturally and linguistically adapted foundation.
Seaman Jones EL, Ali FRM, Kreslake JM
… +3 more, Gentzke AS, Schillo BA, Marynak K
J Natl Cancer Inst Monogr
· 2025 Aug · PMID 40795909
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Although numerous US jurisdictions restrict the sale of flavored tobacco products, the comprehensiveness of policies varies greatly. This study assesses differences in tobacco product use and flavored tobacco use among y...Although numerous US jurisdictions restrict the sale of flavored tobacco products, the comprehensiveness of policies varies greatly. This study assesses differences in tobacco product use and flavored tobacco use among youth and young adults residing in areas with and without flavored tobacco restriction policies other than federal-level restrictions, by strength of policy. Cross-sectional data come from Wave 1 (October 2022) of the nationally representative Tobacco Epidemic Evaluation Network (TEEN+) Study of US youth and young adults (N = 10 255). Respondents' latitude and longitude were used to assign flavor policy coverage as no policy (80.9%), partial policy (major exemptions, 11.1%), or strong policy (minor/no exemptions, 8.0%). Policy coverage varied by several demographic characteristics, including race and ethnicity (P < .001), household smoking (P < .01), and household e-cigarette exposure (P < .01). Compared with living in an area with no flavor policy, a lower prevalence of any tobacco product use (aPR = 0.76, P < .001) and a lower prevalence of any flavored tobacco product use (aPR = 0.70, P < .001) were observed for those covered by strong flavor policies in multivariable Poisson regressions, adjusting for other individual- and state-level covariates. Living in an area with a partial flavor restriction was not significantly associated with different prevalence of either outcome in adjusted models compared with living in an area with no flavor policy. However, currently only 1 in 12 young people are protected by strong flavored tobacco sales restrictions, with notable gaps by race and ethnicity. Strong flavored tobacco sales restrictions that protect everyone, everywhere might help accelerate declines in youth and young adult tobacco use.
J Natl Cancer Inst Monogr
· 2025 Aug · PMID 40795907
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The US surgeons general have been at the forefront of directing global attention to tobacco-caused cancers and related health disparities. We conducted an in-person interview with M. Joycelyn Elders, MD, MS, 15th surgeon...The US surgeons general have been at the forefront of directing global attention to tobacco-caused cancers and related health disparities. We conducted an in-person interview with M. Joycelyn Elders, MD, MS, 15th surgeon general of the United States, to understand her perspective on (1) the progress we have made toward eliminating tobacco-related health disparities, (2) progress we hope to make, and (3) actions that must be taken to eliminate disparities. Dr Elders indicated that banning cigarette smoking on planes and in public places resulted in substantial gains. She stated that educational efforts must be made in a way that people understand and that all people must be involved in eliminating disparities, including the federal government, which can reduce the availability of menthol cigarettes. Dr Elders indicated that surgeons general must continue to promote diversity, equity, and inclusion and advance the global mission to improve health.
J Natl Cancer Inst Monogr
· 2025 Aug · PMID 40795906
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Tobacco use is related to persistent health disparities and is the leading preventable cause of death worldwide. The negative effects of tobacco on health have been a longstanding public health issue. Historically, the U...Tobacco use is related to persistent health disparities and is the leading preventable cause of death worldwide. The negative effects of tobacco on health have been a longstanding public health issue. Historically, the US response to the detrimental impact of smoking has been related to taxes and public bans. Although these interventions have reduced overall smoking rates, little has been done to reduce tobacco-related disparities, especially among racial and ethnic minority groups, low-income groups, and rural populations. As the immediate past president of the National Medical Association, I am deeply committed to addressing the toll that tobacco use has taken on marginalized communities. Tobacco-related disparities have created a public health crisis that disproportionately affects marginalized communities. It is time we shift the paradigm in how we approach these disparities and seek innovative, community-centered solutions to reduce tobacco use and improve health outcomes within a structured timeline.
Simone NL, Burke S, Hamade K
… +2 more, Leader A, McNair C
J Natl Cancer Inst Monogr
· 2025 Jul · PMID 40671549
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BACKGROUND: Sexual and gender minority (SGM) patients face disparities in cancer care, partly due to the lack of sexual orientation and gender identity (SOGI) data collection. We sought to use electronic health record-ba...BACKGROUND: Sexual and gender minority (SGM) patients face disparities in cancer care, partly due to the lack of sexual orientation and gender identity (SOGI) data collection. We sought to use electronic health record-based metrics, integrated with SOGI data to characterize the SGM cancer population with the future goal of addressing disparities within this population. METHODS: The cancer population was identified using Epic's active cancer registry at Thomas Jefferson University Hospital. Additional data elements linked included SOGI information, general demographics, alcohol and drug use, molecular diagnostic information, and census-level SDOH data. Z-tests assessed differences in cancer risk factors, social vulnerability index factors, and genomic testing between the 2 populations. RESULTS: A total of 92 116 patients were identified from the active cancer registry with SOGI data available on 9544 patients (565 SGM and 8979 non-SGM patients). The SGM patients were younger, less likely to be married, and had higher rates of cancer associated risk factors. When comparing census-level social vulnerability data, SGM patients were overall more vulnerable. The groups had even representation of cancer types aside from higher anal cancer and Kaposi's sarcoma in the SGM population. No significant differences in cancer genomic testing were noted. CONCLUSIONS: This study highlights the opportunities of integrating SOGI data with clinical and other data types, revealing disparities in cancer risk factors, social determinants of health, and specific cancer types. These findings emphasize the need for targeted interventions and personalized care to address the specific needs of SGM cancer patients and improve their health outcomes.
Parker SL, Ayala-Ramirez M, Montealegre JR
… +1 more, Scheurer ME
J Natl Cancer Inst Monogr
· 2025 Jul · PMID 40671548
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This brief report describes takeaways from the implementation of sexual orientation and gender identity (SOGI) data collection within a matrix comprehensive cancer center. Implementation of standardized and parsimonious...This brief report describes takeaways from the implementation of sexual orientation and gender identity (SOGI) data collection within a matrix comprehensive cancer center. Implementation of standardized and parsimonious SOGI data collection practices is a strategy recommended to improve our understanding of the cancer experiences among sexual and gender minority (SGM) populations. However, interventions are rarely sustained in routine practice without an organized program to support their implementation. We used a stakeholder-engaged approach to integrate a SOGI questionnaire in the electronic health record (EHR) at Dan L Duncan Comprehensive Cancer Center (DLDCCC)-affiliated adult oncology clinics and evaluate its feasibility, acceptability, and utilization among providers and staff. In Phase 1, we convened a Stakeholder Advisory Board (SAB) for this project comprising leadership, providers, and members of the LGBTQ+ community. Through focus groups held over a 12-month period, the SAB defined barriers and facilitators to SOGI data collection and determined strategies to support the sustained implementation of SOGI data collection in oncology clinics. In Phase 2, we assessed the acceptability and feasibility of SOGI data collection among providers and staff. Semistructured interviews showed that key stakeholders perceived SOGI data collection as highly acceptable and feasible. These stakeholders perceived that SOGI data collection may improve clinical decision-making and help provide better patient-centered care to sexual and gender minorities. Barriers at multiple ecological levels hinder routine SOGI data collection. Bundling SOGI data collection implementation with other institutional initiatives was a successful strategy for our partner institution. Implementation strategies focused on provider and staff education. SOGI data collection is highly acceptable among stakeholders in DLDCCC-affiliated adult oncology clinics.
Heffner JL, Giustini N, Anderson N
… +4 more, Go T, Scout NFN, Hippe DS, Triplette M
J Natl Cancer Inst Monogr
· 2025 Jul · PMID 40671547
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Cancer research focusing on sexual and gender minority populations is limited by lack of sexual orientation and gender identity data in medical records and cancer registries. We implemented multimethod sexual orientation...Cancer research focusing on sexual and gender minority populations is limited by lack of sexual orientation and gender identity data in medical records and cancer registries. We implemented multimethod sexual orientation and gender identity data collection in 2 pilot clinics at a National Cancer Institute-Designated Comprehensive Cancer Center, with first-line collection by telephone intake schedulers and second-line via physical form in clinics. Changes in data completion were compared with 2 control clinics, and staff shared intervention experiences. In pilot clinics, completion rates statistically significantly increased for gender identity (from 55.6% to 65.1%), sex assigned at birth (from 58.4% to 63.2%), sexual orientation (from 45.1% to 53.7%), and all 3 (from 37.8% to 44.7%) when compared with control clinics (P < .05). Staff reported a mix of patient reactions to sexual orientation and gender identity data collection. Sexual orientation and gender identity data collection can be enhanced in the cancer care setting with multimethod approaches.
Domogauer JD, Trifonov A, Moore K
… +6 more, Haseltine M, Nelson R, Stasenko M, Chachoua A, Friedman S, Quinn GP
J Natl Cancer Inst Monogr
· 2025 Jul · PMID 40671546
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BACKGROUND: Routine collection and use of sexual orientation and gender identity data can assist in understanding and addressing the health disparities that affect lesbian, gay, bisexual, transgender, queer+ (LGBTQ+), al...BACKGROUND: Routine collection and use of sexual orientation and gender identity data can assist in understanding and addressing the health disparities that affect lesbian, gay, bisexual, transgender, queer+ (LGBTQ+), also known as sexual and gender minority, individuals and communities. This study explored the implementation of a culturally relevant sexual and gender minority/sexual orientation and gender identity training program at a National Cancer Institute (NCI)-Designated Comprehensive Cancer Center. METHODS: The training consisted of 6 in-person 15-minute modules or 3 virtual 30-minute modules that occurred during established high-reliability organization huddles attended by oncology faculty and staff. Module topics were (1) Building LGBTQ+ Knowledge & LGBTQ+ Cancer Disparities, (2) Creating an Inclusive Environment, (3) Recovering From Misgendering/Making Assumptions, (4) How to Receive & Respond to Feedback, (5) Witnessing & Responding to Discrimination, and (6) Making and Sustaining a Change. All high-reliability organization attendees were considered eligible for participation and were provided with pretraining and post-training surveys. Survey items included comfort caring for sexual and gender minority patients, practice collecting sexual orientation and gender identity data, knowledge of sexual and gender minority health, and demographics. RESULTS: A total of 344 individuals completed the presurvey and 187 completed the postsurvey. Postsurvey results demonstrated a statistically significant improvement in self-perceived knowledge about sexual and gender minority health (scale: 0-100, with 100 = highest; presurvey vs postsurvey, 69 vs 84; P < .001). Respondents also reported statistically significant improvements in confidence in engaging with sexual orientation and gender identity questions (53 vs 79, P < .001) as well as intention to collect patient sexual orientation and gender identity information (49 vs 75, P < .001). Notably, sexual orientation and gender identity data collection tracking demonstrated a 311% increase in sexual orientation and 262% in gender identity disclosure during the study period. CONCLUSION: Despite the availability of sexual orientation and gender identity data fields within electronic health records, sexual orientation and gender identity disclosure remains an ongoing nationwide problem. Use of culturally relevant sexual and gender minority/sexual orientation and gender identity training can help improve oncology staff and clinician sexual and gender minority knowledge and confidence when engaging patients with and subsequent documentation of sexual orientation and gender identity data, resulting in improvement of data completion.
Lewis JB, Alpert A, Galusha D
… +6 more, Faria AB, Hirschman A, Wolfe HL, Hart L, Nunez-Smith M, Wang KH
J Natl Cancer Inst Monogr
· 2025 Jul · PMID 40671545
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BACKGROUND: There is insufficient epidemiologic data to serve sexual and gender minority communities. However, disclosing sexual orientation and gender identity in health care presents risks to patients. METHODS: We coll...BACKGROUND: There is insufficient epidemiologic data to serve sexual and gender minority communities. However, disclosing sexual orientation and gender identity in health care presents risks to patients. METHODS: We collected surveys from 174 cancer hospital patients to understand their perspectives on safety associated with sexual orientation and gender identity data collection. RESULTS: Overall, 18.4% of participants identified as sexual or gender minorities. Sexual and gender minority participants were more likely to report experiencing unequal treatment in health care than participants who did not identify as a sexual or gender minority. Most patients felt safe or comfortable answering sexual orientation and gender identity questions and having health-care professionals within their health system view their data. Fewer wanted data available to front-desk staff or shared to other health systems. Few thought sexual orientation and gender identity was important to health care. Most believed their data would be kept safe and private; patient concerns included stigma, privacy, and data vulnerability. CONCLUSIONS: Better policy protections and data segmentation are needed to achieve patient safety and health-care quality related to sexual orientation and gender identity data collection.
Guan A, Duffy C, Loya Z
… +3 more, Wadhwa M, Gomez SL, Shariff-Marco S
J Natl Cancer Inst Monogr
· 2025 Jul · PMID 40671544
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Collecting sexual orientation and gender identity (SOGI) data in healthcare settings is essential for addressing the unique health needs and cancer burden of this population. We conducted a qualitative study to assess in...Collecting sexual orientation and gender identity (SOGI) data in healthcare settings is essential for addressing the unique health needs and cancer burden of this population. We conducted a qualitative study to assess institutional leadership and staff perspectives on collecting SOGI data, aiming to improve these processes within our academic medical center. In key informant interviews with 17 staff and leaders, we asked about current SOGI data collection practices and facilitators/barriers for implementing systematic data collection. We sought to understand staff experiences with SOGI data collection, comfort and willingness to collect these data, and challenges in broad implementation of SOGI data collection. Findings indicate need for: training on SOGI data collection to increase staff confidence in engaging with patients; clear workflows for when, how, and by whom SOGI data should be collected; and implementation of flexible approaches to data collection, while balancing patient privacy.