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Perspectives on Precision Health Among Racial/Ethnic Minority Communities and the Physicians That Serve Them.

ABSTRACT: In order for precision health to address health disparities, engagement of diverse racial/ethnic minority communities and the physicians that serve them is critical. A community-based participatory research approach with mixed methods was employed to gain a deeper understanding of precision health research and practice among American Indian, African American, Latino, Chinese, and Vietnamese groups and physicians that serve these communities. A survey assessed demographics and opinions of precision health, genetic testing, and precision health research. Focus groups (n=12) with each racial/ethnic minority group and physicians further explored attitudes about these topics. One hundred community members (American Indian [n=17], African American [n=13], Chinese [n=17], Latino [n=27], and Vietnamese [n=26]) and 14 physicians completed the survey and participated in the focus groups. Familiarity with precision health was low among community members and high among physicians. Most groups were enthusiastic about the approach, especially if it considered influences on health in addition to genes (eg, environmental, behavioral, social factors). Significant concerns were expressed by African American and American Indian participants about precision health practice and research based on past abuses in biomedical research. In addition, physician and community members shared concerns such as security and confidentiality of genetic information, cost and affordability of genetic tests and precision medicine, discrimination and disparities, distrust of medical and research and pharmaceutical institutions, language barriers, and physician's specialty. Engagement of racial/ethnic minority communities and the providers who serve them is important for advancing a precision health approach to addressing health disparities.

SUBMITTER: Rosas LG

PROVIDER: S-EPMC7138446 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Perspectives on Precision Health Among Racial/Ethnic Minority Communities and the Physicians That Serve Them.

Rosas Lisa G LG Nasrallah Catherine C Park Van Ta VT Vasquez Jan J JJ Duron Ysabel Y Garrick Owen O Hattin Riccesha R Cho Mildred M David Sean P SP Evans Jill J McClinton-Brown Rhonda R Martin Christopher C

Ethnicity & disease 20200402 Suppl 1

<h4>Background</h4>In order for precision health to address health disparities, engagement of diverse racial/ethnic minority communities and the physicians that serve them is critical.<h4>Methods</h4>A community-based participatory research approach with mixed methods was employed to gain a deeper understanding of precision health research and practice among American Indian, African American, Latino, Chinese, and Vietnamese groups and physicians that serve these communities. A survey assessed de ...[more]

PMID: 32269455

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Project description:Cardiovascular diseases remain the leading cause of mortality and a major contributor to preventable deaths worldwide. The dominant modifiable risk factors and the social and environmental determinants that increase cardiovascular risk are known, and collectively, are as important in racial and ethnic minority populations as they are in majority populations. Their prevention and treatment remain the foundation for cardiovascular health promotion and disease prevention. Genetic and epigenetic factors are increasingly recognized as important contributors to cardiovascular risk and provide an opportunity for advancing precision cardiovascular medicine. In this review, we explore emerging concepts at the interface of precision medicine and cardiovascular disease in racial and ethnic minority populations. Important among these are the lack of racial and ethnic diversity in genomics studies and biorepositories; the resulting misclassification of benign variants as pathogenic in minorities; and the importance of ensuring ancestry-matched controls in variant interpretation. We address the relevance of epigenetics, pharmacogenomics, genetic testing and counseling, and their social and cultural implications. We also examine the potential impact of precision medicine on racial and ethnic disparities. The National Institutes of Health's All of Us Research Program and the National Heart, Lung, and Blood Institute's Trans-Omics for Precision Medicine Initiative are presented as examples of research programs at the forefront of precision medicine and diversity to explore research implications in minorities. We conclude with an overview of implementation research challenges in precision medicine and the ethical implications in minority populations. Successful implementation of precision medicine in cardiovascular disease in minority populations will benefit from strategies that directly address diversity and inclusion in genomics research and go beyond race and ethnicity to explore ancestry-matched controls, as well as geographic, cultural, social, and environmental determinants of health.

Project description:Objectives To explore the perspectives of ethnic minority community leaders in relation to: the impact of the COVID-19 pandemic on their communities; and their community’s perception, understanding and adherence to government guidelines on COVID-19 public health measures. Design A phenomenological approach was adopted using qualitative semistructured interviews. Settings Community organisations and places of worships in the West Midlands, England. Participants Community leaders recruited through organisations representing ethnic minority communities and religious places of worship. Results A total of 19 participants took part. Participants alluded to historical and structural differences for the observed disparities in COVID-19 morbidity and mortality. Many struggled with lockdown measures which impeded cultural and religious gatherings that were deemed to be integral to the community. Cultural and social practices led to many suffering on their own as discussion of mental health was still deemed a taboo within many communities. Many expressed their community’s reluctance to report symptoms for the fear of financial and physical health implications. They reported increase in hate crime which was deemed to be exacerbated due to perceived insensitive messaging from authority officials and historical racism in the society. Access and adherence to government guidelines was an issue for many due to language and digital barriers. Reinforcement from trusted community and religious leaders encouraged adherence. Points of support such as food banks were vital in ensuring essential supplies during the pandemic. Many could not afford or have access to masks and sanitisers. Conclusion The study highlights the perceived impact of the COVID-19 pandemic on ethnic minority communities. Government agencies and public health agencies need to integrate with the community, and community leaders can enable dissemination of key messages to deliver targeted yet sensitive public health advice which incorporates cultural and religious practices. Addressing the root causes of disparities is imperative to mitigate current and future pandemics.

Project description:ImportanceThe COVID-19 pandemic has had disproportionate effects on racial and ethnic minority communities, where preexisting clinical and social conditions amplify health and social disparities. Many of these communities report lower vaccine confidence and lower receipt of the COVID-19 vaccine. Understanding factors that influence the multifaceted decision-making process for vaccine uptake is critical for narrowing COVID-19-related disparities.ObjectiveTo examine factors that members of multiethnic communities at high risk for COVID-19 infection and morbidity report as contributing to vaccine decision-making.Design, setting, and participantsThis qualitative study used community-engaged methods to conduct virtual focus groups from November 16, 2020, to January 28, 2021, with Los Angeles County residents. Potential participants were recruited through email, video, and telephone outreach to community partner networks. Focus groups were stratified by self-identified race and ethnicity as well as age. Transcripts were analyzed using reflexive thematic analysis.Main outcomes and measuresThemes were categorized by contextual, individual, and vaccine-specific influences using the World Health Organization's Vaccine Hesitancy Matrix categories.ResultsA total of 13 focus groups were conducted with 70 participants (50 [71.4%] female) who self-identified as American Indian (n = 17 [24.3%]), Black/African American (n = 17 [24.3%]), Filipino/Filipina (n = 11 [15.7%]), Latino/Latina (n = 15 [21.4%]), or Pacific Islander (n = 10 [14.3%]). A total of 39 participants (55.7%) were residents from high-poverty zip codes, and 34 (48.6%) were essential workers. The resulting themes included policy implications for equitable vaccine distribution: contextual influences (unclear and unreliable information, concern for inequitable access or differential treatment, references to mistrust from unethical research studies, accessibility and accommodation barriers, eligibility uncertainty, and fears of politicization or pharmaceutical industry influence); social and group influences (inadequate exposure to trusted messengers or information, altruistic motivations, medical mistrust, and desire for autonomy); and vaccination-specific influences (need for vaccine evidence by subpopulation, misconceptions on vaccine development, allocation ambiguity, vaccination safety preferences, the importance of perceiving vaccine equity, burden of vaccine scheduling, cost uncertainty, and desire for practitioner recommendation).Conclusions and relevanceIn this qualitative study, participants reported a number of factors that affected their vaccine decision-making, including concern for inequitable vaccine access. Participants endorsed policy recommendations and strategies to promote vaccine confidence. These results suggest that support of informed deliberation and attainment of vaccine equity will require multifaceted, multilevel policy approaches that improve COVID-19 vaccine knowledge, enhance trust, and address the complex interplay of sociocultural and structural barriers to vaccination.

Project description:We described and compared seniors' stroke-related health beliefs among four racial/ethnic communities to inform a culturally-tailored stroke prevention walking intervention. Specific attention was paid to how seniors combined pathophysiology-based biomedical beliefs with non-biomedical beliefs. We conducted twelve language-concordant, structured focus groups with African American, Chinese American, Korean American, and Latino seniors aged 60 years and older with a history of hypertension (n = 132) to assess stroke-related health beliefs. Participants were asked their beliefs about stroke mechanism and prevention strategies in addition to questions corresponding to four constructs from the Health Belief Model: perceived susceptibility, perceived severity, and benefits and barriers to walking for exercise. Using thematic analysis, we iteratively reviewed and coded focus group transcripts to identify recurrent themes within and between racial/ethnic groups. Participants across all four racial/ethnic groups believed that blockages in brain arteries caused strokes. Factors believed to increase susceptibility to stroke were often similar to biomedical risk factors across racial/ethnic groups, but participants also endorsed non-biomedical factors such as strong emotions. The majority of participants perceived stroke as a serious condition requiring urgent medical attention, fearing paralysis or death, but few mentioned severe disability as a stroke consequence. Participants largely believed stroke to be preventable through physical activity, dietary changes, and medication adherence. Perceived benefits of walking for exercise included improved physical health, decreased bodily pain, and ease of participation. Perceived barriers to walking included limited mobility due to chronic medical conditions, increased bodily pain, and low motivation. While seniors' stroke-related health beliefs were often similar to biomedical beliefs across racial/ethnic groups, we also identified several non-biomedical beliefs that were shared across groups. These non-biomedical beliefs regarding perceived stroke susceptibility and severity may warrant further discussion in stroke education interventions. Patterns in non-biomedical beliefs that vary between groups may reflect cultural differences. Stroke education could potentially increase cultural relevancy and impact by addressing such differences in health beliefs as well as perceived benefits and barriers to walking for exercise that vary between different racial/ethnic groups.

Project description:To investigate racial/ethnic differences in teachers' and other adults' identification and/or encouragement of parents to seek treatment for psychiatric problems in their children and to evaluate if and whether identification/encouragement is associated with service use.Data on identification/encouragement to seek treatment for externalizing disorders (i.e., attention-deficit/hyperactivity disorder, oppositional-defiant disorder, and/or conduct disorder) and internalizing disorders (i.e., major depressive episode/dysthymia and/or separation anxiety disorder) and services used were obtained for 6,112 adolescents (13-17 years of age) in the National Comorbidity Survey Adolescent Supplement. Racial/ethnic differences were examined for Latinos, non-Latino blacks, and non-Latino whites.There were few racial/ethnic differences in rates of youth identification/encouragement and how identification/encouragement related to service use. Only non-Latino black youth with low severity internalizing disorders were less likely to be identified/encouraged to seek services compared with non-Latino white youth with the same characteristics (odds ratio [OR] = 0.4, 95% confidence interval [CI] = [0.2-0.7]). Identification/encouragement increased the likelihood of seeking services for externalizing and internalizing disorders for all youth. However, compared with their non-Latino white counterparts, non-Latino black youth who met criteria for internalizing disorders appeared less likely to have used any services (OR = 0.4, 95%, CI = 0.2-0.7), after adjusting for identification/encouragement, clinical, and sociodemographic characteristics. Non-Latino black youth with internalizing disorders and without identification/encouragement were less likely to use the specialty care sector than their non-Latino white counterparts.In this study of a nationally representative sample of adolescents, almost no ethnic/racial differences in identification/encouragement were found. However, identification/encouragement may increase service use for all youth.

Project description:OBJECTIVES:Evaluate the independent and interactive effects of dementia and racial/ethnic minority status on functional outcomes during a home health (HH) admission among Medicare beneficiaries. METHODS:Secondary analysis of data from the Outcome and Assessment Information Set [OASIS] and billing records in a non-profit HH agency in New York. Participants were adults ? 65 years old who received HH in CY 2017 with OASIS records at HH admission and HH discharge. Dementia was identified by diagnosis (ICD-10 codes) and cognitive impairment (OASIS: M1700, M1710, M1740). We used OASIS records to assess race/ethnicity (M0140) and functional status (M1800-M1870 on activities of daily living [ADL]). Functional outcome was measured as change in the composite ADL score from HH admission to HH discharge, where a negative score means improvement and a positive score means decline. RESULTS:The sample included 4,783 patients, among whom 93.9% improved in ADLs at HH discharge. In multivariable linear regression that adjusted for HH service use and covariates (R2 = 0.23), being African American (? = 0.21, 95% confidence interval [CI]: 0.06, 0.35, p = 0.005) and having dementia (? = 0.51, 95% CI: 0.41, 0.62, p<0.001) were independently related to less ADL improvement at HH discharge, with significant interaction related to further decrease in ADL improvement. Relative to white patients without dementia, African American patients with dementia (? = 1.08, 95% CI: 0.81, 1.35, p<0.001), Hispanics with dementia (? = 0.92, 95% CI: 0.38, 1.47, p = 0.001) and Asian Americans with dementia (? = 1.47, 95% CI: 0.81, 2.13, p<0.001) showed the least ADL improvement at HH discharge. CONCLUSION:Racial/ethnic minority status and dementia were associated with less ADL improvement in HH with independent and interactive effects. Policies should ensure that these patients have equitable access to appropriate, adequate community-based services to meet their needs in ADLs and disease management for improved outcomes.

Project description:BACKGROUND: In Vietnam, primary government health services are now accessible for the whole population including ethnic minority groups (EMGs) living in rural and mountainous areas. However, little is known about EMGs' own perspectives on illness treatment and use of health services. This study investigates treatment seeking strategies for child diarrhoea among ethnic minority caregivers in Northern Vietnam in order to suggest improvements to health services for EMGs and other vulnerable groups. METHODS: The study obtained qualitative data from eight months of field work among four EMGs in lowland and highland villages in the Northern Lao Cai province. Triangulation of methods included in-depth interviews with 43 caregivers of pre-school children (six years and below) who had a case of diarrhoea during the past month, three focus group discussions (FGDs) with men, and two weeks of observations at two Communal Health Stations (CHGs). Data was content-analyzed by ordering data into empirically and theoretically inspired themes and sub-categories assisted by the software NVivo8. RESULTS: This study identified several obstacles for EMG caregivers seeking health services, including: gender roles, long travelling distances for highland villagers, concerns about the indirect costs of treatment and a reluctance to use government health facilities due to feelings of being treated disrespectfully by health staff. However, ethnic minority caregivers all recognized the danger signs of child diarrhoea and actively sought simultaneous treatment in different health care systems and home-based care. Treatments were selected by matching the perceived cause and severity of the disease with the 'compatibility' of different treatments to the child. CONCLUSIONS: In order to improve EMGs' use of government health services it is necessary to improve the communication skills of health staff and to acknowledge both EMGs' explanatory disease models and the significant socio-economic constraints they experience. Broader health promotion programs should address the significant gender roles preventing highland mothers from seeking health services and include family elders and fathers in future health promotion programs. Encouraging existing child health care practices, including continued breastfeeding during illness and the use of home-made rehydration solutions, also present important opportunities for future child health promotion.

Dataset Information

Perspectives on Precision Health Among Racial/Ethnic Minority Communities and the Physicians That Serve Them.

Publications

Perspectives on Precision Health Among Racial/Ethnic Minority Communities and the Physicians That Serve Them.

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