Ethnicity Data Research Articles

Not Indian, Not African: Classifying the East African Asian Population in Aotearoa New Zealand

This paper explores the challenges of measuring and classifying the East African Asian population in Aotearoa New Zealand. As a particularly diverse country, New Zealand has a significant and varied population of immigrants from South Asia, including India, Pakistan and Bangladesh, along with immigrants of South Asian origin, from Fiji, Southeast Asia, the Caribbean and East Africa. New Zealand’s system of ethnic classification relies on self-identification, with a broad definition of ethnicity encompassing heritage, ancestry, culture, language and feelings of belonging. However, the collection of this information at a granularity that enables detailed analysis is constrained for the South Asian population, regardless of origin or identification. People are typically presented with the choice of selecting “Indian” ethnicity as a tick box, or providing ethnicities under “Other” as write-in descriptors, which in turn are coded to a limited set of categories within the classification being used. This practice potentially conceals a diversity of ethnicities, which can only partially be hinted at by responses to questions relating to religions, languages and birthplaces, especially for second or third-generation descendants of migrants. Ethnic classification at the highest level, moreover, includes East African Indians as Asian, rather than African, reflecting diasporic heritage as a shorthand for ancestry and overlooking the relevance of layers of identity associated with the double diaspora. Drawing on Peter J. Aspinall’s work on collective terminology in ethnic data collection and categorizing the “Asian” ethnic group in the UK, this paper looks at the overlaps and disconnects between heritage, ethnicity and national belonging in classifying less clearcut identities. We explore the strengths and limitations of New Zealand’s self-identification approach to ethnic identity, and query what exactly is being asked of groups on the margins: when self-identification does not match external perception, are we looking for geographic, cultural, or genetic origins? A focus on the East African Asian population in Aotearoa highlights the complexity of identity for diasporic groups with distant ancestral links with India, as lived experience of cultural connection extends far beyond the bounds of ethnicity, language and even ancestry.

Reasons for Declining Participation in Inpatient Research Among Historically Minoritized Racial and Ethnic Communities: A Scoping Review

BackgroundTo promote equitable recruitment for studies conducted in the inpatient hospital setting, we sought to characterize reasons why individuals, both from historically minoritized racial and ethnic groups and the broader patient population, refuse participation in clinical trials within inpatient settings. MethodsAn exhaustive search of the literature was conducted in Cochrane Library, Google Scholar, Embase, MEDLINE, PubMed, Scopus, and Web of Science databases to find relevant articles published from the inception of each database to April 30, 2023. Studies recruiting patients during their inpatient stay and reporting reasons for refusing participation in clinical trials met the inclusion criteria. ResultsThe search resulted in 2264 citations, of which 22 were included. 14 did not report data related to race, while 19 reported no ethnicity data. Reasons for refusal across trials included study burden and inconvenience (n=16), transportation and logistical issues (n=13), lack of interest in research (n=12), and refusal to be randomized (n=10). Prominent concepts included the importance of incorporating social support systems in consenting processes, lack of efforts to include data or recruitment efforts for individuals from minoritized groups, and physician involvement in recruitment. DiscussionTo enhance participation among historically minoritized communities in clinical trials, greater efforts must be made to collect demographic information and document refusal reasons to inform future recruitment methods. Strategies include proactively accounting for culture and language differences in study design and recruitment and intentionally engaging social support networks. Limiting study burden and logistics and optimizing collaborations between clinical and research teams would promote accessibility and foster patient trust.

Unlocking equity: assessing for gaps in cardiovascular guidelines for pregnant women

Abstract Introduction Cardiovascular disease is the primary contributor to pregnancy-related fatalities in the United States, displaying a gradual rise over the years. Pregnancy introduces unique physiological changes that can impact pre-existing cardiovascular conditions and trigger new complications. Considerable inequalities in pregnancy-related mortality built on race and ethnicity are unmistakable, with the highest rates observed in black non-Hispanic women. Purpose This study aims to evaluate current gaps in racial/ethnic minority participation in randomized control trials (RCTs) cited in major cardiology guidelines. Methods Citations in the 2018 ESC Guidelines for the Management of Cardiovascular Diseases During Pregnancy were evaluated for RCTs. The American Heart Association and American College of Cardiology guidelines were also examined. Manuscripts and supplementary data were examined for participant-level racial or ethnic data, including age, race, and ethnicity. Results Thirteen RCTs, representing 20,665 participants, spanning the period from 2002 to 2017, were reviewed. European guidelines referenced thirteen of the RCTS, while American guidelines referenced two RCTs. The average age of participants was 31 years old. Most of the trials were conducted in Europe (46%). Forty-six percent of RCTs reported race/ethnicity breakdowns, with pooled participation showing a majority of non-Hispanic white participants (76.7%), with limited representation from other racial groups (table). Eight trials focused on hypertension, two on venous thromboembolism, and one on heart failure. Conclusion Pregnant women are frequently excluded from RCTs due to concerns about potential harm to the developing fetus. Consequently, current guidelines lack robust RCTs tailored to pregnant women with various cardiovascular diseases. The underrepresentation of ethnic minorities in cardiovascular disease trials contributes to a scarcity of evidence-based recommendations for managing these conditions during pregnancy and postpartum. Future clinical practice guidelines should advocate for a more personalized and evidence-based approach to managing cardiovascular diseases in pregnancy.

Launching Financial Incentives for Physician Groups to Improve Equity of Care by Patient Race and Ethnicity.

Blue Cross Blue Shield of Massachusetts (BCBSMA), a large commercial health insurer, is using financial incentives to advance equity of care by patient race and ethnicity. Understanding experiences of this payer and its contracted physician groups can inform efforts elsewhere. We qualitatively assess physician groups' barriers and facilitators of planning and implementing BCBSMA's financial incentives to improve equity of ambulatory care quality by patient race and ethnicity. Key informant interviews (n = 44) of the physician group, BCBSMA, and external stakeholders were conducted, equity initiative meetings were observed, and documents were analyzed to identify barriers and facilitators of designing and preparing for financial incentives to advance racial equity. Physician group experiences of preparing for and responding to financial incentives for equity improvement were assessed. Analyses revealed 1) the central importance of valid and reliable equity performance measurement and carefully designed equity improvement incentives for physician group buy-in, 2) that prior to implementing financial incentives for equity improvement, physician groups needed to improve their quality management systems and the accuracy and completeness of patient race and ethnicity data, and 3) physician groups' populations served, baseline maturity of quality management systems, and efforts to assess and address patients' social risk factors were central to consider to plan for physician group financial incentives to improve racial equity. Given the major infrastructure investments and organizational change management resources required of physician groups to participate in a financial incentive program designed to reward equity improvement, alignment of equity measurement and performance requirements across payers would facilitate physician groups' engagement in efforts to improve quality of care for racial and ethnic minority patients.

What impact does urinary and anal incontinence have on a woman’s quality of life?

The impact of pelvic floor dysfunction is often far-reaching, and can have a devastating impact on women’s lives. In the past 50 years, the concept of quality of life (QOL) has been increasingly used, but despite acceptance that relevant data are an important metric, there is little mention of it within the available pelvic-health-related grey literature. Therefore, this literature review looks at the published evidence to evaluate the impact that urinary incontinence (UI) and anal incontinence (AI) have on a woman’s QOL. A systematic search was conducted that involved MEDLINE, CINAHL, AMED, Google Scholar, pertinent grey literature and a hand-search of reference lists in relevant papers published in the English language between 2012 and 2022. The inclusion criteria were limited to two elements of pelvic health, i.e. UI and AI, because these are common, definable symptoms, and articles tend to focus on condition-specific, health-related QOL. The literature search was also limited to “titles only” because of the high-volume return rate when “abstract and title” was employed. Among the 418 papers initially identified, five met the eligibility criteria: three were specific to UI; and two focused on AI as a result of obstetric anal sphincter injuries and its impact on QOL. The literature review identified three themes: QOL is negatively affected by UI and AI; UI and AI have a negative impact across the different domains of QoL; and finally, there are geographical variations in UI and AI. It also offered some insight into the risk factors for and the prevalence of UI and AI that was in keeping with current literature. Continence is considered to be among the most basic of needs. These findings support the perception that UI and AI are both prevalent, and have a myriad of far-reaching consequences that negatively impact QOL. The results of this literature review demonstrate that there is a clear need for QOL measures in pelvic health research. However, there is also a need for standardized outcome measures to allow for a greater depth of synthesis, and where possible, meta-analysis. Future research needs to ensure that geographical and ethnicity data are considered and accurately reported in order to gain deeper insights and address known health inequalities. In line with current thinking, health professionals and women themselves should be made aware of the prevalence of and known risk factors for UI and AI so that they can focus on prevention and early recognition to optimize lifelong pelvic health.

Leveraging Multiple Administrative Data Sources to Reduce Missing Race and Ethnicity Data: A Descriptive Epidemiology Cross-Sectional Study of COVID-19 Case Relative Rates.

Understanding race and ethnicity (RE) differentials improves health outcomes. However, RE data are consistently missing from electronic laboratory reports, the primary source of COVID-19 case metrics. We addressed the missing RE differentials and compared vaccinated and unvaccinated cases from March 1, 2020, to May 30, 2023, in New York State (NYS), excluding New York City. This descriptive epidemiology cross-sectional study linked the NYS Electronic Clinical Laboratory Reporting System (ECLRS) with NYS Immunization Information System (NYSIIS) to address the missing RE data in the ECLRS system. The primary metric was the COVID-19 case relative risk (RR) for each RE relative to white individuals. There were 4,212,741 COVID-19 cases with 39% (1,624,818) missing RE data in ECLRS; missing RE data declined to 17% (726,023) after matching with NYSIIS. For those aged 65years or older (after matching), 42% were missing in 2020, which declined by 17% by 2023. In May 2021, COVID-19 RRs for vaccinated individuals were 1.09 (95% CI 0.90-1.32), 1.11 (95% CI 0.87-1.43), 1.13 (95% CI 0.93-1.39), and 1.89 (95% CI 1.01-3.52), and for unvaccinated individuals were 1.73 (95% CI 1.66-1.82), 0.84 (95% CI 0.78-0.92), 3.10 (95% CI 2.98-3.22), and 3.49 (95% CI 3.05-3.98) respectively for Hispanic, Asian/Pacific Islander, Black people, and American Indian/Alaska Native individuals. Matching case data with vaccine registries reduce missing RE data for COVID-19 cases. Disparity was lower in vaccinated than in unvaccinated individuals indicating that vaccination mitigated RE disparities early in the pandemic. This underscores the value of interoperable systems with automated matching for disparity analyses.

Venous thromboembolism and ovarian cancer risk: a Mendelian randomized study

IntroductionA potential link between venous thromboembolism and the risk of ovarian cancer has been identified in clinical practice. However, it is unclear whether there is a causal relationship between the two. In this study, we applied a univariate two-sample Mendelian randomization method to explain the possible link between venous thromboembolism and ovarian cancer pathogenesis at the genetic level, and pointed out that lipid metabolism and ovarian cancer pathogenesis have innovative basic experimental directions.ObjectiveThis study explored the causal effect between a history of venous thromboembolism and the risk of ovarian cancer.MethodsGenome-Wide Association Study (GWAS) data of venous thromboembolism patients (n = 9176) of the same ethnicity were selected as study exposures, and GWAS data of ovarian cancer patients (n = 1218) of the same ethnicity were selected as study exposures. In this study, univariate two-sample Mendelian randomization analysis (UVMR) was performed separately using inverse variance weighted (IVW), MR-Egger regression, and weighted median (WM) to assess causal effects. In this study, Cochran’s Q test, MR-Egger regression intercept term, MR-PRESSO, and leave-one-out method were used for sensitivity analysis to assess the stability and reliability of the results.ResultsThe GWAS data screened in this study were all European ethnicity data. In this study, we found that genetically predicted history of venous thromboembolism was associated with an upward trend in ovarian cancer incidence, and the results of Weighted median, Simple mode, Weighted mode, and MR Egger showed a similar trend (OR = 1.0006, 95% CI: 1.00007–1.0013, p < 0.05). There was no heterogeneity of results (p = 0.18) and no horizontal pleiotropy (p = 0.77). The instrumental variables selected for venous thromboembolism in this study were all strong instrumental variables (F = 669.7). The results of the sensitivity analysis remained consistent.ConclusionThe results of this study indicate that patients with a history of venous thromboembolism are at increased risk of developing ovarian cancer and point to possible associations between lipid metabolism genes, such as CYP4V2, and the development of ovarian cancer, which provide interesting directions for further basic research.

Estimating Prevalence and Number of People With Chronic Hepatitis B: A Multiplier Method Based on Public Health Surveillance Data in UK (2015-2021).

Estimates of chronic hepatitis B virus (HBV) prevalence and critically the amount of infection that is undiagnosed or unlinked to care are uncertain-even in countries like UK where vertical transmission and overall prevalence are very low. In the absence of country of birth data, we aim to estimate HBV prevalence through combining public health surveillance data on antenatally screened women by ethnic group and multipliers generated from non-antenatally screened populations by ethnic group with English population denominators. Of 714,287 women aged 16-49 years with ethnic group data tested as part of antenatal care between 2015 and 2021, 4174 (0.6%) were HBsAg-positive; 94% in people of ethnic groups other than White British. Of 1,447,467 people tested for HBsAg with ethnic group data from other testing sources (primary and secondary care excluding occupational health and renal services), 27,628 (1.9%) were HBsAg-positive; 87% in people of ethnic groups other than White British. We estimate that the overall number and prevalence of people with chronic hepatitis B in England is 268,767 (95% CI: 227,896-314,044) and 0.58% (95% CI: 0.50-0.68). Approximately two-thirds were male, one-third female, and 68% were aged under 50. We estimate that over 83% of HBV infections are in people of ethnic groups other than White British, with 23% in people from Black ethnic groups, 21% from other White ethnic groups and 19% in Asian ethnic groups. These estimates are the first step towards establishing whether England can meet World Health Organisation targets to eliminate HBV as a public health problem-using methods that can also be used by other countries.

Factors associated with biological and targeted synthetic disease-modifying antirheumatic drug initiation for rheumatoid arthritis in underserved patient groups in England and Wales, UK: a national cohort study

Quantifying health-care inequality is essential to addressing the imbalance in outcomes attributable to age, sex, race or ethnicity, and multimorbidity. In this study, we analysed differences in the initiation of biological or targeted synthetic disease-modifying antirheumatic drugs (DMARDs) in patients with rheumatoid arthritis within the universal health-care system of England and Wales, UK. An observational cohort study was conducted using the National Early Inflammatory Arthritis Audit (NEIAA) dataset. We included all patients with rheumatoid arthritis who were enrolled in NEIAA between May 8, 2018, and April 30, 2022, and who had 12-month follow-up data available. Modified Poisson regression was used to explore factors associated with the initiation of biological and targeted synthetic DMARDs within 12 months of initial rheumatology assessment. The factors evaluated included age, sex, ethnicity, socioeconomic status (index of multiple deprivation), smoking status, and relevant comorbidities (lung disease, cardiovascular disease, cancer, and depression). NEIAA is supported by people with lived experience of rheumatoid arthritis, who contributed to study design and the interpretation of findings. 6098 patients in NEIAA had new diagnoses of rheumatoid arthritis and available follow-up data. The mean age was 59·2 years (SD 14·9); 3912 (64·2%) patients were women and 2186 (35·8%) were men. 6047 (99·2%) patients had available ethnicity data, of whom 5215 (86·2%) were White, 152 (2·5%) were Black, 478 (7·9%) were Asian, and 202 (3·3%) were of mixed or other ethnicities. 508 (8·3%) of 6098 patients initiated biological and targeted synthetic DMARDs within 12 months. Patients younger than 40 years were more likely to be initiated on biological and targeted synthetic DMARDs than individuals older than 65 years (multivariable-adjusted risk ratio 2·41 [95% CI 1·83-3·19]; p<0·0001). Asian individuals were less likely to be initiated on biological and targeted synthetic DMARDs than White individuals (0·52 [0·36-0·76]; p=0·0007), which persisted after adjustment for socioeconomic status, comorbidities, baseline disease severity, and the initial response to conventional synthetic DMARDs. These differences were evident for Asian women but not Asian men. Black individuals were more likely to be initiated on biological and targeted synthetic DMARDs than White individuals (1·54 [1·10-2·16]; p=0·012), which became non-significant after adjusting for baseline disease severity and autoantibody status. The initiation of biological and targeted synthetic DMARDs for patients with newly diagnosed rheumatoid arthritis varies markedly by ethnicity and age in the universal health-care system of England and Wales. This study demonstrates the importance of providing tailored information and ensuring equitable access to high-quality care for underserved patient groups. The one-size-fits-all approach must be reconsidered if health disparities are to be mitigated effectively. Sandoz UK.

The journey to building a diverse, equitable, and inclusive American Medical Informatics Association.

The American Medical Informatics Association (AMIA) Task Force on Diversity, Equity, and Inclusion (DEI) was established to address systemic racism and health disparities in biomedical and health informatics, aligning with AMIA's mission to transform healthcare. AMIA's DEI initiatives were spurred by member voices responding to police brutality and COVID-19's impact on Black/African American communities. The Task Force, consisting of 20 members across 3 groups aligned with AMIA's 2020-2025 Strategic Plan, met biweekly to develop DEI recommendations with the help of 16 additional volunteers. These recommendations were reviewed, prioritized, and presented to the AMIA Board of Directors for approval. In 9 months, the Task Force (1) created a logic model to support workforce diversity and raise AMIA's DEI awareness, (2) conducted an environmental scan of other associations' DEI activities, (3) developed a DEI framework for AMIA meetings, (4) gathered member feedback, (5) cultivated DEI educational resources, (6) created a Board nominations and diversity session, (7) reviewed the Board's Strategic Planning for DEI alignment, (8) led a program to increase diversity at the 2020 AMIA Virtual Annual Symposium, and (9) standardized socially-assigned race and ethnicity data collection. The Task Force proposed actionable recommendations that focused on AMIA's role in addressing systemic racism and health equity, helping the organization understand its member diversity. This work supported marginalized groups, broadened the research agenda, and positioned AMIA as a DEI leader while reinforcing the need for ongoing transformation within informatics.

Adverse outcomes and mortality in individuals with eating disorder-related electrolyte abnormalities in Ontario, Canada: a population-based cohort study

Individuals with eating disorders are at a higher risk of electrolyte abnormalities than the general population. We conducted the first representative cohort study assessing whether electrolyte abnormalities in people with eating disorders were associated with mortality and physical health outcomes. This was a retrospective population-based cohort study in Ontario including people aged 13 years or older with an eating disorder and an outpatient electrolyte measure within 1 year (between Jan 1, 2008 and June 30, 2019). An electrolyte abnormality was any of hypokalaemia, hyperkalaemia, hyponatraemia, hypernatraemia, hypomagnesaemia, hypophosphataemia, metabolic acidosis, or metabolic alkalosis. The primary outcome was all-cause mortality. Secondary outcomes were hospitalisation, a cardiac event, infection, acute or chronic kidney disease, fracture, and bowel obstruction. In additional analyses, we examined a younger cohort (<25 years old) and individuals with no previously diagnosed secondary outcome. We involved people with related lived or family experience in the study. 6163 patients with an eating disorder and an electrolyte measure within 1 year since diagnosis (mean age 26·8 years [SD 17·5]; 5456 [88·5%] female, 707 [11·5%] male; median follow-up 6·4 years [IQR 4-9]) were included. Ethnicity data were not available. The most common electrolyte abnormalities were hypokalaemia (994/1987 [50·0%]), hyponatraemia (752/1987 [37·8%]), and hypernatraemia (420/1987 [21·1%]). Overall, mortality occurred in 311/1987 (15·7%) of those with an electrolyte abnormality versus 234/4176 (5·6%) in those without (absolute risk difference 10·1%; adjusted hazard ratio 1·23 [95% CI 1·03-1·48]). Hospitalisation (1202/1987 [60·5%] vs 1979/4176 [47·4%]; 1·35 [1·25-1·46]), acute kidney injury (206/1987 [10·4%] vs 124/4176 [3%]; 1·91 [1·50-2·43]), chronic kidney disease (245/1987 [12·3%] vs 181/4176 [4·3%]; 1·44 [1·17-1·77]), bone fracture (140/1987 [7·0%] vs 167/4176 [4·0%]; 1·40 [1·10-1·78]), and bowel obstruction (72/1987 [3·6%] vs 57/4176 [1·4%]; 1·62 [1·12-2·35]) were associated with an electrolyte abnormality, but not infection or a cardiovascular event. Findings were consistent in young individuals (<25 years old) and those without secondary outcomes at baseline, by eating disorder type, and by sex. Electrolyte abnormalities are associated with death and poor physical health outcomes, supporting the importance of monitoring and possible interventions to prevent adverse outcomes. Findings also call for a refinement of the definition of severity of eating disorder and replication of these findings in other jurisdictions. None.

The impact of ethnicity on care and outcome after hip fracture in England and Wales.

To determine if patient ethnicity among patients with a hip fracture influences the type of fracture, surgical care, and outcome. This was an observational cohort study using a linked dataset combining data from the National Hip Fracture Database and Hospital Episode Statistics in England and Wales. Patients' odds of dying at one year were modelled using logistic regression with adjustment for ethnicity and clinically relevant covariates. A total of 563,640 patients were included between 1 April 2011 and 1 October 2020. Of these, 476,469 (85%) had a coded ethnicity for analysis. Non-white patients tended to be younger (mean 81.2 vs 83.0 years), and were more commonly male (34.9% vs 28.5%; p < 0.001). They were less likely to be admitted from institutional care (12.9% vs 21.8%; p < 0.001), to have normal cognition (53.3% vs 62.0%; p < 0.001), and to be free of comorbidities (22.0% vs 26.8%; p < 0.001), but were more likely to be from the most deprived areas (29.4% vs 17.3%; p < 0.001). Non-white patients were more likely to experience delay to surgery for medical reasons (14.8% vs 12.7%; p < 0.001), more likely to be treated with an intramedullary nail or a sliding hip screw (52.5% vs 45.1%; p < 0.001), and less likely to be mobilized by the day after surgery (74.3% vs 79.0%; p < 0.001). Mortality was higher among non-white inpatients (9.2% vs 8.4% for white), but was lower at one year after hip fracture (26.6% vs 30.3%). Our study identified serious problems with the quality of NHS ethnicity data. Despite this, we have shown that there is complex variation in case-mix and hip fracture morphology between ethnic groups. We have also identified variations in care received between ethnic groups, and that disparities in healthcare may contribute to poorer outcome. Inpatient mortality is higher in non-white patients, although this finding reverses after discharge, and one-year mortality is lower. Patients from ethnic minority backgrounds experience disparities in healthcare, however at one year postoperatively non-white patients have a statistically significant lower mortality after controlling for relevant clinical covariates.

Ethnicity in neuro-oncology research: How are we doing and how can we do better?

This study systematically reviews and meta-analyses the extent of ethnic minority representation in neuro-oncology Phase III and IV clinical trials, explores the effect of ethnicity on outcomes, and identifies predictors for the inclusion of ethnicity data in publications. Adhering to PRISMA guidelines, we conducted a comprehensive literature search across multiple databases, on Phase III and IV trials in neuro-oncology that reported on adult and/or paediatric subjects. Through meta-analysis, we synthesized information on overall survival, event-free survival, and the incidence of adverse outcomes across ethnicities. From 448 identified articles, a fraction reported ethnicity data, with an even smaller number providing outcome data stratified by ethnicity. Most study participants were identified as White, underscoring a significant underrepresentation of minorities. Our meta-analysis did not reveal significant outcome differences by ethnicity, which may be attributed to the limited and inadequate reporting of data. Predictors for including ethnicity data were identified, including trials in North America(OR2.39, 95%CI 1.18-5.12, p < 0.02),trials of drugs or biologic agents(OR 5.28, 95%CI 1.43-3.42, p < 0.05),and trials funded by charities(OR 2.28, 95% CI 1.04-5.27, p < 0.05) or pharmaceutical companies(OR 3.98, 95% CI 1.60-10.0, p < 0.005). The underrepresentation of minorities in neuro-oncology clinical trials and the inadequately characterized impact of ethnicity on treatment outcomes highlight a critical need for more inclusive recruitment strategies and improved reporting standards. Change is necessary to ensure trials reflect the diversity of the patient population, which is essential for developing tailored strategies and improving outcomes. Future research should prioritize understanding the role of ethnicity in neuro-oncology to facilitate personalized treatment approaches.

Unveiling Disparities: Analyzing Hispanic Inclusion in Liver Cancer Research Databases in the United States

AbstractPrimary liver cancer, including hepatocellular carcinoma and intrahepatic cholangiocarcinoma was the sixth leading cause of cancer death in the United States in 2023. Hispanic people constitute approximately 19% of the nation’s total population according to the US Census. Hispanic patients have the highest relative incidence rates of liver cancer compared to non-Hispanic Whites and non-Hispanic Blacks, a disparity frequently overlooked in cancer research. In this study, our primary objective was to analyze the potential underrepresentation of Hispanic individuals in liver cancer research databases. We identified databases that had liver cancer-specific studies and be population-based in the United States. Our search yielded 7 cancer genomic databases, which were analyzed according to incidence percentages across ethnicity and race categories. Our study included 3104 patients; ethnic data was not reported for 13.1% (n = 406) of the patients. Samples were predominantly from individuals who identified as Not Hispanic (81.0%), Hispanic individuals represented 5.9%. Race was reported as follows: non-Hispanic Whites (61.0%), Asians (22.0%), non-Hispanic Blacks (5.4%), Other (3.1%), Native American/American Indian/Alaska Native (0.4%), Pacific Islander/Native Hawaiian (0.2%) and not reported (7.9%). These findings collectively underscore significant disparities in the representation of ethnic and racial groups, particularly Hispanics. Given the present racial and ethnic demographics of the US population and the projected surge in the Hispanic population in forthcoming years, it becomes imperative to address health disparities that may worsen without efforts to enhance proper inclusion in cancer research.

Abstract A080: Improving outcomes: Addressing racial and ethnic disparities in colorectal cancer genomic research

Abstract Colorectal cancer (CRC) is the fourth most common cancer diagnosed in the United States (U.S.). This disease presents notable health disparities among racial and ethnic minorities in the U.S. Native Americans (NA) and non-Hispanic Blacks (NHB) exhibit the highest incidence and mortality rates for CRC compared to non-Hispanic Whites (NHW). These disparities are driven by a combination of factors, including socioeconomic inequalities, access to healthcare, lifestyle habits, and genetic susceptibilities. Minority populations often face delays in diagnosis and treatment, leading to advanced disease stages at presentation and poorer outcomes. Addressing these disparities through cancer genomics is essential for developing effective, personalized treatments that can improve outcomes for underrepresented populations. Comprehensive genomic studies can reveal genetic mutations and biomarkers unique to these groups, facilitating targeted therapies and preventive measures tailored to their specific needs. To address these disparities, we conducted an analysis of U.S. population-based colorectal cancer studies within 3 cancer genomic databases: the National Cancer Institute’s Genomic Data Commons, the AACR Project GENIE, and cBioPortal. We identified 13 studies suitable for inclusion, calculating incidence percentages across all racial and ethnic categories. Our analysis encompassed a total of 20,295 patients. Among the analyzed patients, the racial distribution was as follows: NHW (68.5%), Asians (5.30%), NHB (7.7%), Other (5.6%), NA (0.2%), Pacific Islander/Native Hawaiian (0.07%), and not reported (12.7%). Ethnic data was missing for 24.1% (n=4,895) of the patients. Samples were predominantly from individuals identified as Not Hispanic (68.4%), while Hispanic individuals constituted 7.5%. Our results show significant underrepresentation of NHB, NA and Hispanic patients in CRC genomic databases highlighting a disparity between expected and actual representation. These findings underscore the critical need for inclusive research practices. Addressing these disparities in cancer genomics is imperative to develop equitable, effective treatments and improve health outcomes for all populations. Ensuring diverse representation in genomic databases will enhance the understanding of genetic differences across populations, inform targeted therapies, and ultimately contribute to reducing CRC disparities. By addressing these disparities, we can move towards a future where all populations benefit equally from advancements in CRC treatment and prevention, thus improving survival rates and quality of life for minority groups. Citation Format: Gabriela Arroyo Figueroa, Tim F. Greten, Cecilia Monge. Improving outcomes: Addressing racial and ethnic disparities in colorectal cancer genomic research [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr A080.

Abstract B051: Improving Race and Ethnicity Data Completeness Using a Concise Survey Designed to Collect Social Determinants of Health (SDoH) Data: Results from Two Community Oncology Practices

Abstract Background: Race and ethnicity (R/E) information is crucial for understanding health disparities and the efficacy/effectiveness of treatments across different patient groups. However, these data are often missing or inaccurate in EHR. Literature suggests that surveys can improve upon these gaps in EHR R/E data. FDA recently issued guidance on collecting and reporting R/E data using standardized terminology, which should be applied to demographic data in new clinical trials and studies. N-Power Medicine (NPM) developed a concise survey, incorporating FDA’s R/E recommendations, to collect SDoH data as part of its registry (Kaleido) enhanced oncology network platform for quality data collection. Here, we report the initial R/E findings from this survey. Methods: Patients participating in the Kaleido Registry at 2 community oncology practices across different US regions completed the survey during their clinic visits with assistance from NPM onsite staff. The survey allowed multiple race selections to include mixed races and a free-text option for “Other”. R/E data from the same patients were also extracted from EHRs. Completeness was reported as the percentage of informative answers: any race, other, and chose not to disclose. “Unknown” and “Not available” were missing data. Results: Between November 11, 2023 and April 30, 2024, 1109 patients completed the questionnaire with over 99% response rate. Both sites contributed equally and had similar patient demographics: about 61% female and 79% aged 60 or above. The large majority of patients had breast cancer followed by lung and colorectal cancers. Survey completeness was 96.7% for race and 99.6% for ethnicity, as compared with EHR completeness of 78.6% for race and 91.1% for ethnicity. 21% of EHR data for race was coded as "Unknown and Not Available. About 20% of the survey respondents were Hispanic or Latino. Both sites’ EHR data included expected R/E categories except for one site having 21 additional unique race entries. The majority of survey participants were White (W, 75.7%) followed by Asian (A, 3.6%), American Indian or Alaska Native (AI/AN, 3.2%), Black or African American (B/AA, 2.4%), Native Hawaiian or Pacific Islander (NH/PI, 1.0%) and multiple-selection (2.9%; Other and W (8), AI/AN (3), A (2); W and AI/AN (10), A (7); A and AI/AN (1), W and B (1)). 11% of responses were Other, which included various races (15% European/Caucasian), nationalities, ethnicities (49% Hispanic) and religions, hence, could be further disambiguated. We will report details regarding the survey respondent’s other SDoH. Conclusions: We successfully implemented a standardized questionnaire, incorporating FDA R/E collection recommendations, at two community oncology sites. The results demonstrate that the NPM R/E questionnaire has higher completeness compared to EHR data, allowing better assessment of the impact of R/E on clinical trial enrollment, genomic testing utilization, treatment patterns, and outcomes. This improvement is vital for understanding and addressing health disparities in oncology care. Citation Format: Michael Zachary Koontz, Ayse Tezcan, Julie Latham, Phyllis Ortiz, Joseph Nathaniel Paulson, Annette Campbell Fontaine. Improving Race and Ethnicity Data Completeness Using a Concise Survey Designed to Collect Social Determinants of Health (SDoH) Data: Results from Two Community Oncology Practices [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B051.

Tailoring Risk Prediction Models to Local Populations.

Risk estimation is an integral part of cardiovascular care. Local recalibration of guideline-recommended models could address the limitations of existing tools. To provide a machine learning (ML) approach to augment the performance of the American Heart Association's Predicting Risk of Cardiovascular Disease Events (AHA-PREVENT) equations when applied to a local population while preserving clinical interpretability. This cohort study used a New England-based electronic health record cohort of patients without prior atherosclerotic cardiovascular disease (ASCVD) who had the data necessary to calculate the AHA-PREVENT 10-year risk of developing ASCVD in the event period (2007-2016). Patients with prior ASCVD events, death prior to 2007, or age 79 years or older in 2007 were subsequently excluded. The final study population of 95 326 patients was split into 3 nonoverlapping subsets for training, testing, and validation. The AHA-PREVENT model was adapted to this local population using the open-source ML model (MLM) Extreme Gradient Boosting model (XGBoost) with minimal predictor variables, including age, sex, and AHA-PREVENT. The MLM was monotonically constrained to preserve known associations between risk factors and ASCVD risk. Along with sex, race and ethnicity data from the electronic health record were collected to validate the performance of ASCVD risk prediction in subgroups. Data were analyzed from August 2021 to February 2024. Consistent with the AHA-PREVENT model, ASCVD events were defined as the first occurrence of either nonfatal myocardial infarction, coronary artery disease, ischemic stroke, or cardiovascular death. Cardiovascular death was coded via government registries. Discrimination, calibration, and risk reclassification were assessed using the Harrell C index, a modified Hosmer-Lemeshow goodness-of-fit test and calibration curves, and reclassification tables, respectively. In the test set of 38 137 patients (mean [SD] age, 64.8 [6.9] years, 22 708 [59.5]% women and 15 429 [40.5%] men; 935 [2.5%] Asian, 2153 [5.6%] Black, 1414 [3.7%] Hispanic, 31 400 [82.3%] White, and 2235 [5.9%] other, including American Indian, multiple races, unspecified, and unrecorded, consolidated owing to small numbers), MLM-PREVENT had improved calibration (modified Hosmer-Lemeshow P > .05) compared to the AHA-PREVENT model across risk categories in the overall cohort (χ23 = 2.2; P = .53 vs χ23 > 16.3; P < .001) and sex subgroups (men: χ23 = 2.1; P = .55 vs χ23 > 16.3; P < .001; women: χ23 = 6.5; P = .09 vs. χ23 > 16.3; P < .001), while also surpassing a traditional recalibration approach. MLM-PREVENT maintained or improved AHA-PREVENT's calibration in Asian, Black, and White individuals. Both MLM-PREVENT and AHA-PREVENT performed equally well in discriminating risk (approximate ΔC index, ±0.01). Using a clinically significant 7.5% risk threshold, MLM-PREVENT reclassified a total of 11.5% of patients. We visualize the recalibration through MLM-PREVENT ASCVD risk charts that highlight preserved risk associations of the original AHA-PREVENT model. The interpretable ML approach presented in this article enhanced the accuracy of the AHA-PREVENT model when applied to a local population while still preserving the risk associations found by the original model. This method has the potential to recalibrate other established risk tools and is implementable in electronic health record systems for improved cardiovascular risk assessment.

Vitamin D Level of Individuals Having Medical Service in a Tertiary Hospital

OBJECTIVE: This study aimed to investigate the status of vitamin D level, rates of insufficiency and deficiency in individuals seeking medical services in a tertiary hospital.METHODS: This retrospective study was conducted between October 1, 2022, and December 24, 2023. Inclusion criteria were individuals aged 18 years or older who had sought medical services in our hospital between August 2021 to May 2022. Information such as age, gender, ethnicity, and personal health data including vitamin D level, blood pressure, body mass index, and bone mineral density were collected. The percentages and risk features among the individuals with inadequate vitamin D levels were analyzed.RESULTS: Among the 2,459 participants, the mean age was 52.0 years (interquartile range [IQR] 40, 67 years). Approximately one third had one or more health disorders (31.1%), with 29.7% being overweight, 10.8% being obese, and 57.3% having high blood pressure. Osteopenia or osteoporosis was found in 33.2%. The median vitamin D level was 26.3 ng/mL (IQR 19.4, 36.0 ng/mL), with 61.8% had inadequate vitamin D levels as insufficiency in 35.2% and deficiency in 26.6%. Univariable analysis revealed the following three features showing significant association with inadequate vitamin D levels: age younger than 60 years (odds ratio [OR] 2.3, p-value &lt; 0.001), Thai ethnicity (OR 1.3, p-value = 0.014), and overweight/obesity (OR 1.3, p-value = 0.002). Multivariable analysis showed that all three features were independent risk factors for inadequate vitamin D levels.CONCLUSION: This study showed a high percentage of inadequate vitamin D levels among the participants, with insufficiency in approximately one third and deficiency in one fourth. Older people, Thai people, and overweight/obese people were at risk of inadequate vitamin D levels.

Sequential [177Lu]Lu-PSMA-617 and docetaxel versus docetaxel in patients with metastatic hormone-sensitive prostate cancer (UpFrontPSMA): a multicentre, open-label, randomised, phase 2 study

Lutetium-177 [177Lu]Lu-prostate-specific membrane antigen (PSMA)-617 improves survival and quality of life in patients with metastatic castration-resistant prostate cancer, but whether it confers a benefit in hormone-sensitive disease is unknown. We aimed to evaluate [177Lu]Lu-PSMA-617 before docetaxel treatment in patients with de-novo high-volume metastatic hormone-sensitive prostate cancer. UpFrontPSMA was an investigator-initiated, multicentre, open-label, randomised, phase 2 trial done at 11 Australian hospitals. Eligible patients had prostate adenocarcinoma without clinically significant neuroendocrine differentiation or small-cell histology, were aged 18 years or older, had less than 4 weeks on androgen deprivation therapy, had an Eastern Cooperative Oncology Group performance status of 0-2, and had high-volume PSMA-avid disease on [68Ga]Ga-PSMA-11 PET-CT with no major discordance on 2-[18F] fluorodeoxyglucose-PET-CT. Patients were randomly assigned (1:1) to the experimental treatment ([177Lu]Lu-PSMA-617 followed 6 weeks later by docetaxel) or standard-of-care treatment (docetaxel alone) using computer-based block randomisation with random block sizes, stratified by disease volume by conventional imaging and duration of androgen deprivation therapy at the time of registration. Neither patients nor investigators were masked to treatment assignment. Patients in the experimental group received two cycles of [177Lu]Lu-PSMA-617 7·5 GBq every 6 weeks intravenously, followed 6 weeks later by six cycles of docetaxel 75 mg/m2 every 3 weeks intravenously, whereas patients in the standard-of-care treatment group received six cycles of docetaxel 75 mg/m2 every 3 weeks intravenously. All patients received continuous androgen deprivation therapy. The primary endpoint was undetectable prostate-specific antigen (≤0·2 ng/mL) at 48 weeks, assessed using a modified intention-to-treat analysis. The trial is registered with ClinicalTrials.gov, NCT04343885. Between May 5, 2020, and April 18, 2023, 130 patients were randomly assigned, 63 (48%) to [177Lu]Lu-PSMA-617 plus docetaxel and 67 (52%) to docetaxel alone. All patients were male and no race or ethnicity data were collected. Median follow-up was 2·5 years (IQR 1·8-3·0). Four patients in the docetaxel alone group withdrew consent after randomisation and no data beyond screening were collected. An additional four patients were not evaluable for the primary endpoint at 48 weeks (two in each group). 25 (41%) of 61 patients (95% CI 30-54) in the [177Lu]Lu-PSMA-617 plus docetaxel group had undetectable PSA at 48 weeks compared with ten (16%) of 61 patients (9-28) in the docetaxel alone group (OR 3·88, 95% CI 1·61-9·38; p=0·0020). The most common grade 3 or 4 treatment-related adverse events were febrile neutropenia (seven [11%] of 63 patients in the [177Lu]Lu-PSMA-617 plus docetaxel group vs six [10%] of 63 patients in the docetaxel alone group) and diarrhoea (four [6%] of 63 patients vs none). Serious adverse events occurred in 16 (25%) patients in the [177Lu]Lu-PSMA-617 plus docetaxel group (none were definitely related to [177Lu]Lu-PSMA-617) and 16 (25%) patients in the docetaxel alone group. No treatment-related deaths occurred. [177Lu]Lu-PSMA-617 followed by docetaxel improved antitumour activity in patients with de-novo high-volume metastatic hormone-sensitive prostate cancer compared with docetaxel alone, without increased toxic effects. Our data potentially support a role for [177Lu]Lu-PSMA-617 in metastatic hormone-sensitive prostate cancer. Prostate Cancer Research Alliance (Movember Foundation and Australian Government Medical Research Future Fund), US Department of Defence Impact Award-Clinical Trials, Endocyte/Advanced Accelerator Applications (a Novartis company), Australian Nuclear Science and Technology Organization, Victorian Cancer Agency, University of Melbourne, and Peter MacCallum Cancer Foundation.

Linkage error and ethnicity information source affect estimates of ethnic disparities in non-communicable disease rates

Objective and ApproachThis study examined the impact of two sources of bias on differences in ethnic disparities in non-communicable disease rates in New Zealand (NZ). Data were sourced from Stats NZ’s Integrated Data Infrastructure (IDI), a collection of deidentified whole-population administrative (eg, health, justice, housing) and survey datasets (eg, NZ Census) linked at the individual level using probabilistic linkage procedures. Linking several datasets reduces the size of the population available for study because not all individuals can be linked. In addition, there are several sources of ethnicity information that may disagree with each other. We will illustrate the impact of population loss due to linkage and ethnicity data source on Māori-European gaps in lung cancer and cardiovascular disease. ResultsOur results showed that the choice of ethnicity information source and the population used had an impact on the size of ethnic disparities in lung cancer and cardiovascular disease. For lung cancer the age standardised rate ratio for Māori:European ranged from 2.88 to 3.21, and for CVD 1.70 to 1.87. Population loss and ethnicity data source each had independent effects on the size of ethnic differences. ConclusionsDifferent combinations of population and ethnicity information source produced different estimates of ethnic gaps in lung cancer and CVD prevalence. Population and source of ethnicity data both had independent effects on the size of ethnic differences. ImplicationsComparisons of ethnic differences in disease prevalence between studies, or over time, may be misleading if they do not use the same population and ethnicity data source.