Issues With Variability in Electronic Health Record Data About Race and Ethnicity: Descriptive Analysis of the National COVID Cohort Collaborative Data Enclave.

BACKGROUND: The adverse impact of COVID-19 on marginalized and under-resourced communities of color has highlighted the need for accurate, comprehensive race and ethnicity data. However, a significant technical challenge related to integrating race and ethnicity data in large, consolidated databases is the lack of consistency in how data about race and ethnicity are collected and structured by health care organizations. OBJECTIVE: This study aims to evaluate and describe variations in how health care systems collect and report information about the race and ethnicity of their patients and to assess how well these data are integrated when aggregated into a large clinical database. METHODS: At the time of our analysis, the National COVID Cohort Collaborative (N3C) Data Enclave contained records from 6.5 million patients contributed by 56 health care institutions. We quantified the variability in the harmonized race and ethnicity data in the N3C Data Enclave by analyzing the conformance to health care standards for such data. We conducted a descriptive analysis by comparing the harmonized data available for research purposes in the database to the original source data contributed by health care institutions. To make the comparison, we tabulated the original source codes, enumerating how many patients had been reported with each encoded value and how many distinct ways each category was reported. The nonconforming data were also cross tabulated by 3 factors: patient ethnicity, the number of data partners using each code, and which data models utilized those particular encodings. For the nonconforming data, we used an inductive approach to sort the source encodings into categories. For example, values such as "Declined" were grouped with "Refused," and "Multiple Race" was grouped with "Two or more races" and "Multiracial." RESULTS: "No matching concept" was the second largest harmonized concept used by the N3C to describe the race of patients in their database. In addition, 20.7% of the race data did not conform to the standard; the largest category was data that were missing. Hispanic or Latino patients were overrepresented in the nonconforming racial data, and data from American Indian or Alaska Native patients were obscured. Although only a small proportion of the source data had not been mapped to the correct concepts (0.6%), Black or African American and Hispanic/Latino patients were overrepresented in this category. CONCLUSIONS: Differences in how race and ethnicity data are conceptualized and encoded by health care institutions can affect the quality of the data in aggregated clinical databases. The impact of data quality issues in the N3C Data Enclave was not equal across all races and ethnicities, which has the potential to introduce bias in analyses and conclusions drawn from these data. Transparency about how data have been transformed can help users make accurate analyses and inferences and eventually better guide clinical care and public policy.

Perceived Discrimination, Retention, and Diabetes Risk Among American Indians and Alaska Natives in a Diabetes Lifestyle Intervention.

Objectives: To examine the association of perceived discrimination with participant retention and diabetes risk among American Indians and Alaska Natives. Methods: Data were drawn from the Special Diabetes Program for Indians-Diabetes Prevention Demonstration Project (N = 2553). Results: Perceived discrimination was significantly and negatively associated with short-term and long-term retention and diabetes risk without adjusting. After controlling for socioeconomic characteristics and clinical outcomes, perceived discrimination was not associated with retention but was significantly associated with less improvement in body mass index (BMI) and high-density lipoprotein (HDL) cholesterol. Every unit increase in the perceived discrimination score was associated with 0.14 kg/m2 less BMI reduction (95% CI: [0.02, 0.26], p = 0.0183) and 1.06 mg/dl lower HDL at baseline (95% CI: [0.36, 1.76], p = 0.0028). Discussion: Among racialized groups, improving retention and health in lifestyle interventions may require investigating perceived discrimination and the broader context of structural racism and colonialism.

An indigenous framework of the cycle of fetal alcohol spectrum disorder risk and prevention across the generations: historical trauma, harm and healing.

Objective: To build on Evans-Campbell's [2008. "Historical Trauma in American Indian/Native Alaska Communities: A Multilevel Framework for Exploring Impacts on Individuals, Families, and Communities." Journal of Interpersonal Violence 23 (3): 316-338. doi:10.1177/0886260507312290.] multilevel framework of historical trauma and health by focusing on the cycle of fetal alcohol spectrum disorders (FASD) in the socio-cultural, historical, and interpersonal context of trauma shared by American Indian and Alaska Native (AI/AN) peoples.Methods: We analyzed qualitative data from focus groups with seventy four urban AI/ANs who were 15 years of age and older. Community-based participatory research methods were used for data collection and analysis. Our study explored knowledge and attitudes about FASD, perspectives on FASD risk factors, and culturally relevant approaches to FASD prevention and healthcare.Results: According to our study's participants, efforts to address FASD among urban AI/ANs should align with and emerge from community values, promote healing, consider the broader context that influences behaviors, and reflect the community's understanding that FASD risk behaviors are inextricably linked with historical and contemporary trauma.Conclusion: Effective, multiple-level FASD prevention approaches for AI/ANs may include prioritizing Indigenous culture, supporting intergenerational cohesion, focusing on non-stigmatic healing of traumas, and authentically engaging community knowledge. This work draws on community and cultural strengths in an effort to reduce the occurrence of substance-exposed pregnancies, and encourages transformational changes in systems that serve AI/AN peoples to promote a healthy and thriving community and future generations.

Racial and Ethnic Disparities in Desire for Reversal of Sterilization Among U.S. Women.

Purpose: Racial and ethnic disparities in rates of female sterilization, a prominent method of contraception, have been consistently observed for decades. Such disparities are also evident in subsequent desire for reversal of the procedure. Additional work is needed to better understand these patterns, particularly given the historical context of coercive sterilization patterns in minority and low-income women. Materials and Methods: Two cycles of the National Survey of Family Growth data are pooled (2011-2013 and 2006-2010) and used to estimate odds ratios (ORs) for race and ethnicity, controlling for payment method, age at sterilization, number of long-term partners, and other known covariates. Results: After adjusting for other factors, the odds of desire for reversal were 70% higher (OR 1.70, confidence interval [95% CI] 1.26-2.29) in non-Hispanic (NH) Black and 54% (OR 1.54, 95% CI 1.14-2.08) in Hispanic women compared to their NH White counterparts. In addition, the likelihood of desire for reversal was substantially increased with lower age at sterilization, a higher number of partners, and lower education. Conclusions: Robust findings of desire for reversal among racial and ethnic minorities, taken together with increased desire for reversal on the basis of specific personal characteristics, merit attention to the possibility that disproportionate outcomes reflect a lack of access to desired contraception and an inability to achieve desired fertility goals in marginalized populations.

Assessing the Everyday Discrimination Scale among American Indians and Alaska Natives.

The Everyday Discrimination Scale (EDS) has been used widely as a measure of subjective experiences of discrimination. The usefulness of this measure for assessments of perceived experiences of discrimination by American Indian and Alaska Native (AI/AN) peoples has not been explored. Data derived from the Special Diabetes Program for Indians--Healthy Heart Demonstration Project (SDPI-HH), a large-scale initiative to reduce cardiovascular risk among AI/ANs with Type 2 diabetes. Participants (N = 3,039) completed a self-report survey that included the EDS and measures of convergent and divergent validity. Missing data were estimated by multiple imputation techniques. Reliability estimates for the EDS were calculated, yielding a single factor with high internal consistency (α = .92). Younger, more educated respondents reported greater perceived discrimination; retired or widowed respondents reported less. Convergent validity was evidenced by levels of distress, anger, and hostility, which increased as the level of perceived discrimination increased (all p < .001). Divergent validity was evidenced by the absence of an association between EDS and resilient coping. Resilient coping and insulin-specific diabetes knowledge were not significantly associated with perceived discrimination (p = .61 and 0.16, respectively). However, general diabetes-related health knowledge was significantly associated with perceived discrimination (p = .02). The EDS is a promising measure for assessing perceived experiences of discrimination among those AI/ANs who participated in the SDPI-HH.

Trends and Disparities in Postpartum Sterilization after Cesarean Section, 2000 through 2008.

PURPOSE: Tubal sterilization patterns are influenced by factors including patient race, ethnicity, level of education, method of payment, and hospital size and affiliation. However, less is known about how these factors influence tubal sterilizations performed as secondary procedures after cesarean sections (C-sections). Thus, this study examines variations in the prevalence of postpartum tubal sterilizations after C-sections from 2000 to 2008. METHODS: We used data from the National Hospital Discharge Survey to estimate odds ratios for patient-level (race, marital status, age) and system-level (hospital size, type, region) factors on the likelihood of receiving tubal sterilization after C-section. RESULTS: A disproportionate share of postpartum tubal sterilizations after C-section was covered by Medicaid. The likelihood of undergoing sterilization was increased for Black women, women of older age, and non-single women. Additionally, they were increased in proprietary and government hospitals, smaller hospital settings, and the Southern United States. CONCLUSIONS: Our findings indicate that Black women and those with Medicaid coverage in particular were substantially more likely to undergo postpartum tubal sterilization after C-section. We also found that hospital characteristics and region were significant predictors. This adds to the growing body of evidence that suggests that tubal sterilization may be a disparity issue patterned by multiple factors and calls for greater understanding of the role of patient-, provider-, and system-level characteristics on such outcomes.

Perceived racial discrimination in health care, completion of standard diabetes services, and diabetes control among a sample of American Indian women.

PURPOSE: The purpose of this study is to examine perceived experiences of racial discrimination (perceived discrimination) in health care and its associations with completing standards of care for diabetes management and diabetes control. METHODS: This cross-sectional study included 200 adult American Indian (AI) women with type 2 diabetes from 4 health care facilities located on tribal reservations in the Pacific Northwest. Participants completed a survey, and medical records were abstracted. Logistic regression was completed to assess associations. RESULTS: Sixty-seven percent of AI women reported discrimination during their lifetime of health care. After adjusting for patient characteristics, perceived discrimination was significantly associated with lower rates of dental exam; checks for blood pressure, creatinine, and total cholesterol; and pneumococcal vaccination. The association between perceived discrimination and total number of diabetes services completed was not statistically significant. Perceived discrimination was associated with having A1C values above target levels for diabetes control in unadjusted and adjusted models, but no association was observed for blood pressure or total cholesterol. CONCLUSIONS: In our sample of AI women with diabetes, two-thirds reported experiencing racial discrimination in their health care experience. Those reporting perceived discrimination completed fewer diabetes services and therefore may be at increased risk for comorbidities of diabetes. This finding supports the continued need for culturally responsive health care and programs of diabetes education to recognize perceived discrimination and its potential to impact success in self-management and services utilization.

Psychological trauma symptoms and Type 2 diabetes prevalence, glucose control, and treatment modality among American Indians in the Strong Heart Family Study.

AIMS: The aims of this paper are to examine the relationship between psychological trauma symptoms and Type 2 diabetes prevalence, glucose control, and treatment modality among 3776 American Indians in Phase V of the Strong Heart Family Study. METHODS: This cross-sectional analysis measured psychological trauma symptoms using the National Anxiety Disorder Screening Day instrument, diabetes by American Diabetes Association criteria, and treatment modality by four categories: no medication, oral medication only, insulin only, or both oral medication and insulin. We used binary logistic regression to evaluate the association between psychological trauma symptoms and diabetes prevalence. We used ordinary least squares regression to evaluate the association between psychological trauma symptoms and glucose control. We used binary logistic regression to model the association of psychological trauma symptoms with treatment modality. RESULTS: Neither diabetes prevalence (22%-31%; p=0.19) nor control (8.0-8.6; p=0.25) varied significantly by psychological trauma symptoms categories. However, diabetes treatment modality was associated with psychological trauma symptoms categories, as people with greater burden used either no medication, or both oral and insulin medications (odds ratio=3.1, p<0.001). CONCLUSIONS: The positive relationship between treatment modality and psychological trauma symptoms suggests future research investigate patient and provider treatment decision making.

Perceived experiences of discrimination in health care: a barrier for cancer screening among American Indian women with type 2 diabetes.

PURPOSE: Breast and cervical cancer-mortality disparities are prominent among American Indian women. These disparities, in part, may result from patients perceived experiences of discrimination in health care. This report evaluates the impact of perceived discrimination on screening for breast and cervical cancer in a sample of 200 American Indian women with type 2 diabetes. METHODS: Data were collected from patient report and medical records. Prevalence of breast and cervical cancer screening were assessed. Unadjusted and adjusted logistic regression analyses were used to assess associations between perceived discrimination, cancer screening status, and patients' health care-seeking behaviors. FINDINGS: Substantial proportions of AI women in our sample were behind the recommended schedules of screening for breast and cervical cancer. Adjusted estimates revealed that perceived discrimination was significantly associated with not being current for clinical breast examination and Pap test, and was close to statistical significance with not being current for mammography. The number of suboptimal health care-seeking behaviors increased with higher mean levels of perceived discrimination. CONCLUSIONS: Among AI women, perceived discrimination in health care may negatively influence use of breast and cancer screening services, and health care-seeking behaviors. More research is needed among AIs to examine features of health care systems related to the phenomenon patients perceived experience of discrimination.