Data Initiative for the Analysis of Racial/ Ethnic Health Inequalities in Latin American and Caribbean countries: Protocol for a series of Scoping Reviews

doi:10.21203/rs.3.rs-4022730/v1

Download PDF

Study protocol

Data Initiative for the Analysis of Racial/ Ethnic Health Inequalities in Latin American and Caribbean countries: Protocol for a series of Scoping Reviews

https://doi.org/10.21203/rs.3.rs-4022730/v1

This work is licensed under a CC BY 4.0 License

Version 1

posted

You are reading this latest preprint version

Background: Racial and ethnic health inequities are a public health concern from a range of structural societal conditions rooted in Racism. The collection of disaggregated race and ethnicity-based data is crucial to understand and appropriately address health inequities. Current data collection efforts remain incomplete and insufficiently widespread. In the Americas, the proportions of Afro-descendants are overrepresented in cardiovascular, maternal mortality and vector-borne diseases. There is limited evidence data on race, ethnicity, and health inequities regarding Latin American and the Caribbean region.

Methods: To evaluate the use and scope of population-based race and ethnicity data in health literature. We present a protocol for a series of distinct but interconnected scoping reviews, in the context of racial health inequities across three major health outcomes including i) cardiovascular diseases, ii) maternal, infant, and neonatal mortality, and iii) vector-borne diseases in Latin American and the Caribbean countries between January 1, 2000, to June 30, 2023.

Datasets include PubMed/Medline, Embase, CINAHL (EBSCOhost), Global Health, Scopus, LILACS (Virtual Health Library), Web of Science databases and grey literature. We will include cross-sectional, cohort, case-control, surveillance-based, and ecological study designs that analyzed the relationship between race and ethnicity and the selected health outcomes, written in English, French, Spanish, or Portuguese. This protocol is available on the Open Science Framework (Doi: 10.17605/OSF.IO/PE35D). The scoping reviews follow the Joanna Briggs Institute methodology and the Arksey and O’Malley framework. Will be reported in accordance with the Preferred Reporting Items for Systematic Reviews Extension guidelines.

Discussion: The series of scoping reviews will systematize and make available the current evidence regarding race and ethnicity inequities in the American and Caribbean region within the context of major health outcomes for a better recognition of knowledge gaps.Results will have critical implications for the documentation of the effect of Racism on health outcomes and shaping racial health inequities observed among these health outcomes, the designed and development of policy action to mitigate and eliminate racial health inequities in the Americas, promoting health equity by making of the invisible, visible.

Ethnicity

Health disparities

intersectionality

Structural Racism

Race

Racial Discrimination

Racism

Latin American and Caribbean Region

Race and ethnicity are historical social constructs that have been based on characteristics such as phenotypes and familial ancestry. It has also been used with the purpose of distributing resources and power. This allocation has been shaping hierarchies, benefiting only the favored groups. Injustices that are rooted in ill-treatment, from the pillar of race are termed racism. (1, 2) Jones’ conceptual framework suggests that racism occurs on three levels: i) institutionalized, ii) personally mediated, and iii) internalized(3). Institutionalized racism is explained as the normative differential access to power, opportunities, employability, and adequate medical facilities. Prejudice and discrimination describe personally mediated racism; and consequently, self-devaluation and acceptation are an internalization of the racism(4). Recently, epidemiologists have been focused on the term, systemic racism, which refers to, how racism has been embedding the way societies are organized, operating as a system of interconnected parts working under a racialized logic, shaping the way institutions, social groups, culture, and other dimensions of life in society.(5)

Structural racism, also shapes and impacts on an individual and collective level.(6) Some results of the interactions between the intersectionality of race and ethnicity with structural racism have been found to impact the individual’s life expectancy directly and indirectly. (7) These concepts are crucial to understand and analyse racial and ethnic health data. (8) It’s only recently that it has been acknowledged by epidemiologists and researchers.

Differences in health outcomes among communicable and non-communicable diseases are reported by race and ethnic group, but they are not properly addressed. (8)Race and ethnicity have been used as a proxy for social classes and genotypes, restricting its adequate analysis as a social construct. In data analysis, when adjusting for race and restricting this variable as a single variable, we continue perpetuating the inequities limiting advances in science and causing segregation, marginalization, and barriers in healthcare for different racial and ethnic groups.(4)

Since the nineteenth century, American federal policies on race-data collection changed, improving the inclusion of subcategories of race. The gaps of knowledge are a result of the low-quality data, which is either aggregated or estimated due to a high level of missing and inconsistent race and ethnicity-based data. (3) The Pan-Diaspora project is designed to assess the available evidence in the Americas on the three major health outcomes including i) cardiovascular diseases, ii) maternal, infant, and neonatal mortality, and iii) vector-borne diseases.

By understanding the complexity of the subject and how variable definitions of race, ethnicity, racism, inequity, and health inequities have been presented in the literature, we provide a list of definitions and interpretations used in the context of this document and for the Pan-American Data Initiative for the Analysis of Population Racial/Ethnic Health Inequities (Pan-DIASPORA) project (Box 1).

Pan-DIASPORA Project: Mapping Racial/Ethnic Health Inequities in Latin America

Afro-descendants in Latin America and the Caribbean Region comprise about 21% of the population, representing over half of the Brazilian population, 96% of Haiti, and 36% of Cuba, followed by Colombia, Dominican Republic and Panama, as reported by the Economic Commission for Latin America and the Caribbean (CEPAL). (9)Despite their significant presence, they are severely underserved, with 2.5 times higher likelihood of living in chronic poverty compared to white population groups. (10) Likewise, while advancements in screening, diagnosis, and treatment have been improved, the reduction of disease burden, morbidity, and mortality among Afro-descendants remains facing disparities in the promotion and prevention of health. (11)

The collection of race-based data has been marred with controversy due to a convoluted history of colonialism, slavery, oppression, and racism. (12) Historically, the collection of race-based data was used to target, survey, and control individuals who are perceived as threats or monetary assets to Western society. (3, 13) Hence, hesitancy to provide and to systematically collect race-based data has led to a significant decrease in both the quantity and quality of race-based data. In turn, this intricate history has led to a fragmented understanding of health inequities deeply rooted in the misconception that ‘race’ represents a biological difference among people which continuously emerges in “biologically or genetically based race research”. (14) While it has been sufficiently demonstrated that race is a social construct created to validate the enslavement of racialized groups historically marginalized resulting from discriminatory ideologies based in Racism. (15) Moreover, despite relentless calls for race and ethnicity data collection to identify and address health disparities through evidence-based strategies, little transformative impact has been made.

In the Americas region, there is limited evidence data on race and ethnicity and health inequities outside the US. (16–18) Afro-descendants in the entire Americas and Latinx populations in Anglo-North America, although statistically invisibilized populations, are often overrepresented on the burden of conditions such cardiovascular diseases; maternal, neonatal, and infant mortality; and vector-borne diseases. (19) To address this knowledge gap, the Pan-DIASPORA project seeks to systemically examine the availability, quality, and scope of data; collected and used on race and ethnicity in urban and rural areas in the Pan American region. The Pan-DIASPORA project is, to the best of our knowledge, the first large-scale international data initiative analyzing racial and ethnic health inequities in the Americas and Caribbean region.

Here, we propose a series of interconnected but distinct series of scoping reviews, aiming at a thorough evaluation of the use and scope of population-based race and ethnicity literature from 2000 to 2023, in the context of three major selected health outcomes inequities a) cardiovascular health, b) maternal and infant health, and c) communicable diseases, across countries from Latin America and the Caribbean. The selected period marks the onset of broad systematic data collection on race and ethnicity in the region. (20–22) Scoping reviews were selected to provide a broad but systematic approach to assess the scope of the published literature on racial and ethnic health inequities in the region. We focus on Latin America and the Caribbean given the knowledge gap about health inequities and the Afro-descendant populations literature outside Anglo-North America. The health outcomes were selected based on the Pan American Health Organization’s (PAHO) report on health among Afro-descendants in the region, (23) indicating these three areas as leading causes of morbidity and mortality (Box 2). These topics are the most researched but arguably the least understood conditions disproportionately affecting already vulnerable groups.(9, 23)

Protocol and registration: This generic protocol of a series of scoping reviews was submitted and published on the Open Science Framework (OSF) in August 2023 (Doi: 10.17605/OSF.IO/PE35D). The scoping reviews will follow the Joanna Briggs Institute (JBI) methodology, (24) and the theoretical approach by Arksey and O´Malley, (25, 26) consisting of a six steps framework: 1) Research question identification, 2) Relevant literature, 3) Study selection, 4) Data mapping, 5) Summarize and reporting of the results, and 6) Stakeholder consultation.(26) Details of the procedure are included in our Standard Operating Procedures (SOP) document (Appendix 1). Each health outcome-specific scoping review will be reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement extension for Scoping Reviews (PRISMA-ScR). (27)

Overall Research questions

Considering our focus on three major outcomes in countries from Latin America and the Caribbean, this series of scoping reviews aims to answer the following overall research gaps:

How are race and ethnicity defined and operationalized in Latin American countries and the Caribbean, specifically, regarding health data collection reporting?
What data sources and methodologies are used to study racial health inequities in Latin American and Caribbean countries for cardiovascular disease, maternal and child health, and vector-borne diseases?
What are the patterns and extent of racial health inequities in cardiovascular disease, maternal, infant, and neonatal mortality, and vector-borne diseases in Latin American and Caribbean countries?
Which social and structural determinants of health are associated with the patterns of racial health inequalities for all three major health outcomes in the Latin American and Caribbean region?
What are the underlying mechanisms, conceptual or theoretical framework (e.g., Racism and intersectionality), used to explain racial health inequities for each selected health outcome in the Latin American countries and the Caribbean?

Working groups and health outcome-specific research questions

The Pan-DIASPORA project consists of a group of scholars at different stages, including Undergraduate, MSc and PhD trainees and independent researchers with subject matter expertise in each health outcome. Subject-matter i.e., cardiometabolic risk factors and cardiovascular disease; maternal, infant, and neonatal mortality; and vector-borne diseases (dengue and Zika Virus) working groups were created to conduct the health outcome-specific scoping review. Each working group will include systematic and validated customization of the generic protocol and instruments according to each health outcome, ensuring consistency across thematic areas, promoting transparency and reproducibility, and facilitating teamwork. Working groups distribution and tasks are presented in SOP, Appendix 1.

Before considering specific aspects of the literature synthesis, preliminary search of OSF, PROSPERO, MEDLINE, the Cochrane Database of Systematic Reviews, and the JBI Evidence Synthesis were conducted and no current or underway scoping or systematic reviews on the topic were identified. The population, concept, and context (PCC) framework guided the search questions and strategy (Table 1). (24) Specific research questions for each outcome are described in the (Box 3).

Table 1

Population, concept, and context (PCC) framework for racial and ethnic inequities for cardiometabolic risk factors and cardiovascular disease, maternal and child mortality, and vector-borne diseases in Latin American and Caribbean region.
Descriptor	Cardiometabolic risk factors and cardiovascular disease	Maternal, infant, and neonatal mortality	Vector-borne disease
Population	Adults aged 18 or above from different racial and ethnic backgrounds.	Pregnant individuals from different racial and ethnic backgrounds aged between 10 and 49 years old and infants.	Dengue (DENV) Pediatric Population < 15 years old.
Population			Zika virus (ZIKV) Pregnant women, offspring of women of age 10 years and younger.
Concept	Race and ethnicity are social constructs that could be identified through different proxies between Latin American and Caribbean countries, including self-declaration, skin color, historical and cultural belonging, and language spoken at home.
Outcomes	Cardiometabolic risk factors and cardiovascular disease includes a range of conditions, but in this review, we will consider: i) prevalence of hypertension, diabetes, and obesity (self-declared or measured). Ii) hard clinical outcomes, including stroke, coronary heart disease and ischemic heart disease mortality.	In this review, indicators of maternal and child health include i) maternal mortality by direct and indirect causes, ii) infant and neonatal mortality; ii) adolescent birth rate, and iv) maternal mortality delays, which included delay in seeking care, reaching appropriate care, receiving adequate care.	DENV indicators include: severity, ii) morbidity, iii) alarm signs iv) mortality.
Outcomes			ZIKV outcomes include: I)congenital Zika syndrome (CZS), ii) microcephaly, iii) Zika virus infection in pregnant women, iv) severity of CZS.
Context	Studies conducted in the Latin American Countries and the Caribbean Región, including Belize, Costa Rica, Cuba, Dominican Republic, El Salvador, Guatemala, Haiti, Honduras, Mexico, Nicaragua, Panama, Saint Lucia, Argentina, Bolivia, Brazil, Chile, Colombia, Ecuador, Paraguay, Peru, Uruguay, Venezuela, Bahamas, Antigua, Barbuda, Dominica, Grenada, Jamaica, Saint Kitts, St Vincent, Barbados, Trinidad and Tobago.

Eligibility Criteria

The scoping reviews will include documents: i) published in peer-reviewed journals between January 1, 2000, and June 30, 2023; ii) cross-sectional, cohort, case-control, surveillance-based, and ecological study designs; iii) analyzed the relationship (descriptive or etiological association) between race and ethnicity and the selected health outcomes (i.e., a) cardiometabolic risk factors and cardiovascular disease, b) maternal, infant, and neonatal mortality; c) dengue and Zika virus) customized according to the specific research questions of each health outcome, iv) written in English, French, Spanish, or Portuguese.

Exclusion criteria

i) manuscripts and documents that did not include any information or proxy to evaluate racial health inequities among the three selected outcomes; ii) articles reporting qualitative results only; iii) editorials, correspondences, cases series, and narrative reviews. Literature about countries outside Latin America or the Caribbean. Additional eligibility criteria pertinent to each health outcome are also determined to customize the review as necessary (Table 1).

Search strategy and information sources.

Following the JBI´S PPC framework, relevant studies will be identified as a step to recognize key words, concepts, and sources of information for each outcome-specific research question. (24) The search strategy will be peer-validated with the support of a health sciences librarian in conjunction with the outcome-specific working group and research team at large, considering the important Medical Subject Headings (MeSH) terms and keywords. Another researcher will do a peer-review of the search strategy with a librarian to guarantee replicability. (26) Complementary assessment of the search among databases from PubMed will be done with Polyglot Search software from SR accelerator.(28)

The search strategy will include peer-reviewed and grey literature. We will perform a bibliographic search from January 1, 2000, to June 30, 2023, in PubMed/Medline, Embase (Ovid), CINAHL (EBSCOhost), Global Health (Ovid), Scopus, LILACS (Virtual Health Library), and Web of Science databases. The search strategy, including all identified keywords and index terms, and will be adapted for each included database. Additional records may be obtained manually from cross-examination of references of systematic review and included studies.

Grey literature search will include websites and information sources such as Google Scholar, CEPAL repository, and PAHO databases. We will also conduct targeted research on relevant websites in each Latin American and Caribbean countries, including those responsible for census or health surveys, when possible. All steps necessary to identify relevant grey literature will be registered in the supplementary material for each database or source of information screened. The reference list of studies included in the systematic review will be screened for additional studies. We will use specific keywords to represent the PCC framework, and all steps will be described in the supplementary material (Appendix 1). Additional cross-reference checking of included studies will be done to validate our search and ensure that no studies are missing from the previous searches. (26)

Table 2

PubMed generic search strategy (peer-reviewed by librarian)
	Cardiometabolic risk factors and cardiovascular disease		Maternal and child mortality	Vector-borne disease
Population	Adults [mesh] OR Aged [mesh] OR elderly[TIAB]		("Perinatal Care"[mesh] OR Infan[tw] OR Newborn[tw] OR "neonatal"[all] OR baby[tw] OR babies[tw] OR mother[text word] OR maternal[all] OR Peripartum[text word] OR "postpartum period" [mesh term] OR postpartum[tw] OR "post partum"[tw] OR antenatal[tw] OR perinatal[tw] OR postnatal[tw] OR "post natal"[tw])	Dengue (DENV) child[MeSH Terms] OR pediatrics[MeSH Terms] OR infant[MeSH Terms] OR baby[Text Word] OR babies[Text Word] OR child[Text Word] OR childhood[Text Word] OR children[Text Word] OR infan[Text Word] OR neonat[Text Word] OR newborn[Text Word] OR new born[Text Word] OR pediatric[Text Word] OR paediatric[Text Word] OR adolescen*[Text Word] OR schoolaged[Text Word]
Population	Adults [mesh] OR Aged [mesh] OR elderly[TIAB]			Zika virus (ZIKV) Child[mesh] OR "Infant"[mesh] OR "Pediatrics"[mesh] OR child[all] OR childhood[tw] OR children[tw] OR infan[tw] OR newborn[tw] OR neonatal[all] OR baby[tw] OR babies[tw] OR Maternal[tw] OR "pediatric"[all] OR "paediatric"[all] OR "pregnant women"[mesh] OR "Pregnancy"[mesh] OR "Pregnancy complications"[mesh] OR pregnan[tw]
Concept	(race [tw] OR "Ethnicity"[mesh] OR "ethnology"[subheading] OR "racial"[tw] OR "racism"[tw] OR racist[tw] OR "interracial"[tw] OR "ethnic"[tw] OR "racial groups" [Mesh terms] OR "Black"[tw] OR "Afrodescendant"[tw] OR "social determinant"[tw] OR "visible minorit*"[tw])
Outcomes	"Cardiovascular Diseases"[MESH] OR ("heart"[TIAB] OR "cardiac"[TIAB] OR "coronary"[TIAB]) OR "myocardial"[TIAB] OR Cerebrovascular [TIAB] OR Stroke [TIAB] OR cardiovascular[TIAB] OR ischemi[TIAB] OR ischaemi[TIAB] OR "Ischemia"[MESH] OR infarct[TIAB] OR Hypertension[MeSH] OR Hypertens[TIAB] OR "Blood Pressure"[TIAB] "SBP"[TIAB] OR "DBP"[TIAB] OR "Diabetes Mellitus, Type 2"[Mesh] OR "Obesity"[MeSH]	"Maternal Health"[mesh] OR "Maternal Health Services"[mesh] OR "Maternal Health" [text word] OR "Maternal Mortality" [text word] OR mortality[tw] OR death[tw] OR "birth rate"[tw] OR motherhood[tw] OR Prenatal Care [text word] OR "antenatal care"[tw] OR "perinatal care"[tw] OR "peripartum care"[tw] OR "postpartum care"[tw] OR "health services" [text word] OR "reproductive health" [tiab] OR "delivery of care" [tiab] OR "neonatal death" [text word] OR "postnatal care" [text word] OR "Adolescent birth rate" [text word] OR "teenage birth rate"[tw] OR "adolescent pregnanc"[tw] OR "teenage pregnanc*" [text word] OR "adolescent motherhood"[text word] OR "teenage motherhood"[tw]			Dengue (DENV) "vector borne diseases"[MeSH Terms] OR "arbovirus infections"[MeSH Terms] OR dengue[MeSH Terms] OR "severe dengue"[MeSH Terms] OR "dengue virus"[MeSH Terms] OR "dengue"[Text Word] OR "alarm signs"[Text Word]
Outcomes					Zika virus (ZIKV) "Vector Borne Diseases"[mesh:noexp] OR "Arbovirus Infections"[mesh:noexp] OR Arbovirus*[tw] OR "Zika Virus"[mesh] OR "Zika Virus infection"[mesh] OR "Microcephaly"[mesh] OR Zika[tw] OR “ZIKV”[tw]
Context	"Latin America"[mesh] OR "Latin Americ" OR "South America" OR "Central America" OR "Caribbean" OR "West Indies" OR "Belize" OR "Costa Rica" OR "Cuba" OR "Dominican" OR "El Salvador" OR "Salvadoran" OR "Guatemala" OR "Haiti" OR "Hondura" OR "Mexic" OR "Nicaragua" OR "Panama" OR "Saint Lucia" OR "Argentin" OR "Bolivia" OR "Brazil" OR "Chile" OR "Colombia" OR "Ecuador" OR "Paraguay" OR "Peru" OR "Uruguay" OR "Venezuela" OR "Bahamas" OR "Antigua" OR "Barbuda" OR "Dominica" OR "Grenada" OR "Jamaica" OR "Saint Kitts" OR "St Kitts" OR "St Lucia*" OR "St Vincent" OR "Trinidad and Tobago" OR "Barbados"

Study Records:

Study selection and charting the data.

All references retrieved from databases will be imported to Zotero (www.zotero.org) to check for duplicate records. References will be exported to Covidence ® systemic review software (29) for title/abstract screening, in the first step, and for full text, in the second step. The screening will be conducted by two or more independent reviewers previously trained. In the third step, the reviewers will perform data extraction of all studies retrieved in step two. Before standardized data extraction, the reviewers will be trained on key study descriptors to harmonize the extraction procedures. Data extraction will be guided by a data collection form created by the Pan-DIASPORA research team using the items suggested by the JBI for data charting (26, 30, 31) and customized by each working group as follows: i) article identification (metadata); ii) race and ethnic information (data source and parameterization); iii) outcomes included (type, ascertainment and parameterization); iv) main findings including theoretical, descriptive and quantitative results; v) social determinants associated with racial health inequities (type and parameterization); vi) theoretical/conceptual background used; viii) quality assessment (Appendix 2). Reviewers will extract the data from 10–15 articles per working group to pilot the tool and guarantee consistency and internal validity. Modifications on the tool are expected according to the focus on three selected health outcomes.

Disagreements between reviewers in all steps will be resolved through discussion and collaboration with a third party (e.g., one or two other reviewers) within the working group or by the group of Co-PIs, as necessary (32).The agreement rate between reviewers will be estimated through the kappa coefficient during training and screening process. Finally, two pairs of reviewers will verify and consolidate all the extracted information. Reasons for the exclusion of manuscripts in full text that do not meet the inclusion criteria will be recorded and reported in the scoping review results flowchart.

Data analysis

The planned data analysis aligns with the research questions and aims; it will follow a quantitative descriptive approach of the data and content evaluations for each one of the three selected health outcomes: a) cardiometabolic risk factors and cardiovascular disease, b) maternal, infant, and neonatal mortality; c) dengue and Zika virus. Tabulation of the results will consider: i) The type of variables and proxies used for the outcomes, data sources, and operationalization of race and ethnicity information; ii) The patterns (e.g., temporal or by country) of racial health inequities for each health outcome; iii) Theories and conceptual frameworks used to explain the main findings; and iv) Gaps that still exist in literature. To contribute to properly address the presence of racial and ethnic inequities it is imperative to identify what information is inadequate, unavailable, insufficient, or inconsistent. We will chart identified research gaps if any, understanding that gaps may differ according to the context and the outcome.

To ensure the proper development of this series of scoping reviews, we will follow the PRISMA-ScR guidelines. The flow of studies included in the scoping review will be reported in a modified PRISMA flowchart for each health outcome, on their specific reviews. As recommended by Arksey and O´Malley and the JBI the analysis and report will follow three phases: first, conduct the analysis including a descriptive quantitative thematic summary by primary and secondary outcomes within the given working group and major health outcome. Second, report the results and produce the output that refers to the overall and outcome-specific research questions. This will include i) answers to the overall consideration on the type and use of data on race and ethnicity, and ii) the outcome-specific patterns, determinants, and mechanisms to identify inequities and their type if any reported. Third, discus the implications for future research, practice and, policy considering the meaning of the findings. In turn, as it is recommended by the JBI, each health outcome-specific manuscript will respond to the following questions: i)What is known, and what has been done? ii) What are the main gaps and limitations? ii) What should be the main priorities iv) What should be known to make future recommendations. (24)

Quality appraisal

Although not customary in scoping reviews quality appraisal and considerations of risk of bias aims to improve transparency and robustness. We aim to increase internal validity in our scoping review; therefore, we will assess bias by tools that aligns to the objectives of the scope and the types of studies. A priori a suggested tool is the Mixed Methods Appraisal Tool (MMAT) which is designed for quantitative, qualitative, and mixed methods studies.(33) We anticipate that the risk of bias can be challenging in this context and other tools to identify threats to the validity of the revised literature may be more suitable, in which case each working group will select and document the customized process.

Ethics

The overall protocol was reviewed and approved by McGill University Institutional Review Board (A10-E40-22B). The scoping review does not involve primary data collection about human subjects. Informed consent is not applicable as this is a review study of published data.

Consultation

In addition to the withing working group consultation, the Pan-DIASPORA team at large will be involved in an iterative process for the analysis and interpretation of results in each thematic working group. Key stakeholders may contribute with additional sources of information and bring complementary perspectives on the data collected. As an opportunity for knowledge transfer and exchange with stakeholders in the field, we plan to present preliminary results to local stakeholders (e.g., Colombia and Brazil and other LAC countries).

Dissemination Plan

Results dissemination through peer-review journals will be done ideally as a special issue or a publication series for which the team has created a standardized template for reporting. Also, results will be shared with local movements and communities, stakeholders across the region, and non-governmental institutions, such as PAHO using policy briefs. Online events, such as webinars or experts' panels, and meetings for academic and non-academic audiences will be carried out to present the results. Moreover, the Pan-DIASPORA Project will present the results in conferences (e.g., Latin American Studies Association (LASA) Congress, Afro-Latinidades Conference). All activities of dissemination will be always made in at least the two languages spoken in the region (Portuguese, Spanish, and French) to ensure that the results could be accessible to all, without the barriers of language (Appendix 3).

All strategies to eliminate racial inequities in healthcare should be a priority. The series of scoping reviews are a step towards it and will provide a comprehensive assessment of scientific evidence on the use of race and ethnicity data and the analysis of inequities in the region. The reviews will contribute to a better understanding of whether and how data on race and ethnicity have been used to examine the presence of inequities, how have inequities (if reported) been measured and interpreted. We anticipate our results will provide information on targeted areas to identify research gaps, challenges, and successful experiences over the last 20 years. We expect to create a timeline of inequities and the type of race and ethnicity data used along with the targeted outcomes by country, which could provide insights about performed strategies and opportunities to address issues on racial and ethnic health inequities over time.

The gaps identified in the scoping reviews could be extended or used to infer about the accuracy and quality of data, providing recommendations aiming at decrease barriers and improve sources and systems of information locally and in the region. As presented by the PAHO report on Afro-descendant populations, improving the knowledge of the situation of Afro-descendant populations, and identifying the barriers in data collection, use, and interpretation are helpful to the generation of efficient decisions and policy making to improve the wellbeing of on Afro-descendant populations. (34) These is paramount because there is variation regarding data collection, availability and use of race and ethnicity among Latin American and Caribbean countries. For instance, although countries such as Brazil and Colombia have varying degrees of progress in collecting data and acknowledging the inequities, there is a need to properly obtain disaggregated race and ethnicity variables among the American and Caribbean Region, to increase the ability and quality to conduct research, to be able to implement, interpret and advance research studying the effect of racism as a structural determinant of health and wellbeing.(12)

Limitations

We expect a high level of heterogeneity in both, the assessment of the instruments for the characterization of the data and in the synthesis of the literature, for which we will identify and document the sources of heterogeneity across and within countries. We will make sure to describe, and when possible, estimate qualitatively and or quantitively the heterogeneity, use the appropriate approaches to summarize the evidence, and including an adequate assessment of the quality or the risk of bias. Likewise, interpretations provided from the original reviewed literature could be limited due to bias, structural racism, and incorrect statistical analyses. Therefore, interpretations of our reviews will include objective views on the research, providing recommendations to improve research and knowledge transfer on racial/ethnic health inequities for academics and decision makers.

The series of scoping reviews have critical implications for the accurate documentation of racial health inequities, the creation of measures designed to describe the social conditions in which marginalized racial/ethnic groups are embedded (e.g., racial residential segregation), and the development of policy action designed to mitigate and eliminate racial health inequities in the Pan American region. As of the date we are submitting this proposal, a systematic documentation or organized resource that could provide insights on the collection, utilization, analysis, and interpretation of race/ethnic data in the Latin American region does not exist.

Availability of data materials: The datasets for used, created, and analysed for the scoping reviews are available on the Open Science Framework (OSF) (Doi:10.17605/OSF.IO/PE35D), the Pan-Diaspora Website http://thepandiaspora.unaux.com/?i=1, or could be requested from the Pan-DIASPORA team on reasonable request.

Consent for publication: Not applicable.

Competing interests: The authors declare that they have no competing interests.

Funding: This study is funded by the Canadian Institutes of Health Research (CIHR) Fund Reference Number: PJT-183938.

Author’s Contribution: YS, AJF, YME, MC wrote the first draft of the manuscript. MC, SB, AS, EG, DR, DL, AJF, JWJ, AFO, DP, contributed to the design and analysis plan. YS, YME, CMG, MM, and MC worked in the search strategy. CYP, RG, DHM, KMD, VMF, contributed to record identification. All authors read, contributed to, and approved the final of the manuscript prior submission.

Acknowledgements: We would like to acknowledge Genevieve Gore, Librarian at McGill University for the help with the search methodology. Mabel Carabali holds a Fonds de Recherche du Quebec -Santé. (FRQS) Junior 1 Investigator Award.

Khunti K, Routen A, Banerjee A, Pareek M. The need for improved collection and coding of ethnicity in health research. Journal of Public Health. 2021;43(2):e270-e2.
Quan C, Clark N, Costigan CL, Murphy J, Li M, David A, et al. JBI systematic review protocol of text/opinions on how to best collect race-based data in healthcare contexts. BMJ Open. 2023;13(5):e069753.
Browne S. Dark Matters: On the Surveillance of Blackness: Duke University Press; 2015 2015/09/17/. 32-62 p.
Jones C. Levels of racism: a theoretic framework and a gardener's tale. Am J Public Health. 2000;90(8):1212-5.
Elle Lett EA, Sourik Beltrán,Ashley Michelle Cannon,Onyebuchi A Arah. Conceptualizing, Contextualizing, and Operationalizing Race in Quantitative Health Sciences Research. Annals of Family Medicine. 2022:157-63.
Gee GC, Ford CL. STRUCTURAL RACISM AND HEALTH INEQUITIES: Old Issues, New Directions. Du Bois Rev. 2011;8(1):115-32.
Brewster DR, Morris PS. Indigenous child health: Are we making progress? J Paediatrics Child Health. 2015;51(1):40-7.
Khanijahani A, Iezadi S, Gholipour K, Azami-Aghdash S, Naghibi D. A systematic review of racial/ethnic and socioeconomic disparities in COVID-19. Int J Equity Health. 2021;20(1):248.
Comisión Económica para América Latina y el Caribe (CEPAL)., Fondo de Población de las Naciones Unidas (UNFPA). Afrodescendientes y la matriz de la desigualdad social en América Latina: retos para la inclusión. Santiago, Chile: NU. CEPAL-Fondo de Población de las Naciones Unidas; 2020 2020-10-23. Report No.: LC/PUB.2020/14 Contract No.: LC/PUB.2020/14.
Freire G, Diaz C, Schwartz S, Lopez J, Carbonari F. Afro-descendants in Latin America: Toward a Framework of Inclusion. The World Bank; 2018.
Egede LE. Race, ethnicity, culture, and disparities in health care. J Gen Intern Med. 2006;21(6):667-9.
Bashir H FA, Ortigoza A, Carabili M, Ramos D, Slesinski C, et al. . Making the Invisible, Visible: Race, Racism, and Health Data, Lessons from Latin American Countries. The SALURBAL Project, the Ubuntu Center, and the Pan-DIASPORA Project.Drexel University Dornsife School of Public Health. 2023.
Dorothy E. Roberts. What's Wrong with Race-Based Medicine?: Genes, Drugs, and Health Disparities.Minn. J.L. Sci. & Tech. 2011;12:1.
Sueli C. Racismo, sexismo e desigualdade no Brasil: Selo Negro Edições; 2021 2021/09/16/.
Ford CL, Airhihenbuwa CO. Critical Race Theory, Race Equity, and Public Health: Toward Antiracism Praxis. American Journal of Public Health. 2010;100(S1):S30-S5.
La salud de la población afrodescendiente en América Latina: Pan American Health Organization; 2021 2021. 58 p.
Rights(OHCHR). ECfLAatCEOotUNHCfH. People of African descent in Latin America and the Caribbean: developing indicators to measure and counter inequalities(LC/TS.2019/62)Santiago: ECLAC/OHCHR. 2020.
Dulitzky AE. A Region in Denial: Racial Discrimination and Racism in Latin America. In: Dzidzienyo A,Oboler S, editors. Neither enemies nor friends: Latinos, Blacks, Afro- Latinos. 1st ed. New York: Palgrave Macmillan; 2005 2005. 39-60 p.
Paschel TS. Becoming black political subjects: movements and ethno-racial rights in Colombia and Brazil. Princeton Oxford: Princeton University Press; 2018 2018. 328 p.
Comisión Económica para América Latina y el Caribe. Notas 97 de la Población. 2013:249.
Loveman M. A política de um cenário de dados transformado: estatísticas etnorraciais no Brasil em uma perspectiva comparativa regional. Sociologias. 2021;23.
Paschel TS. The Right to Difference: Explaining Colombia’s Shift from Color Blindness to the Law of Black Communities. American Journal of Sociology. 2010;116(3):729-69.
(PAHO). PAHO. La salud de la población afrodescendiente en América Latina. Washington, D.C.: Pan American Health Organization; 2021 2021. Report No.: 978-92-75-32384-7.
Micah P, Godfrey C, McInerney P, Zachary M, Tricco A, Khalil A. Chapter 11: Scoping reviews. JBI Manual for Evidence Synthesis: JBI; 2020.
Westphaln KK, Regoeczi W, Masotya M, Vazquez-Westphaln B, Lounsbury K, McDavid L, et al. From Arksey and O’Malley and Beyond: Customizations to enhance a team-based, mixed approach to scoping review methodology. MethodsX. 2021;8:101375.
Arksey H, O'Malley L. Scoping studies: towards a methodological framework. International Journal of Social Research Methodology. 2005;8(1):19-32.
Tricco AC, Lillie E, Zarin W, O'Brien KK, Colquhoun H, Levac D, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Ann Intern Med. 2018;169(7):467-73.
Kung J. Polyglot Search Translator. J Can Health Libr Assoc. 2022;43(1).
Cambon L, Minary L, Ridde V, Alla F. [ASTAIRE: Tool for the analysis of the transferability and facilitation of the adaptation of interventions in health promotion, V2-2014]. Sante Publique. 2014;26(6):787-94.
Meudec M, Affun-Adegbulu C, Cosaert T. Review of health research and data on racialised groups: Implications for addressing racism and racial disparities in public health practice and policies in Europe: a study protocol. F1000Res. 2023;12:57.
McHugh ML. Interrater reliability: the kappa statistic. 2012;22(3):276-82.
Hong QN PP, Fàbregues S, Bartlett G, Boardman F, Cargo M, Dagenais P, Gagnon M-P, Griffiths F, Nicolau B, O’Cathain A, Rousseau M-C, Vedel I. . Mixed Methods Appraisal Tool (MMAT), version 2018. Registration of Copyright (#1148552), Canadian Intellectual Property Office, Industry Canada. 2018.
Organización Panamericana de la Salud (PAHO). La salud de la población afrodescendiente en América Latina. In: PAHO, editor. Washington, DC.2021. p. 58.
Ford CL, Harawa NT. A new conceptualization of ethnicity for social epidemiologic and health equity research. Social Science & Medicine. 2010;71(2):251-8.
Lu C, Ahmed R, Lamri A, Anand SS. Use of race, ethnicity, and ancestry data in health research. PLOS Glob Public Health. 2022;2(9):e0001060.
Centers for Disease Control and Prevention (CDC ). Health Disparities Among Racial/Ethnic Populations. Atlanta: U.S. Department of Health and Human Services. 2008.
McCartney G, Popham F, McMaster R, Cumbers A. Defining health and health inequalities. Public Health. 2019;172:22-30.
Bauer GR. Incorporating intersectionality theory into population health research methodology: Challenges and the potential to advance health equity. Social Science & Medicine. 2014;110:10-7.
Crenshaw K. Mapping the Margins: Intersectionality, Identity Politics, and Violence against Women of Color. Stanford Law Review. 1991;43(6):1241.
Carbado DW, Crenshaw KW, Mays VM, Tomlinson B. INTERSECTIONALITY: Mapping the Movements of a Theory. Du Bois Rev. 2013;10(2):303-12.
Collins PH. Intersectionality as Critical Social Theory: Duke University Press; 2019 2019.
De Silva E, Jackson V, Oldman V, Schachter R, Lopez L, Wong J. Institutional Racism & The Social Work Profession: A call to action. National Association of Social Workers. Washington, DC: National Association of Social Workers; 2017 2017.
Zinzi D Bailey NK, Madina Agénor, Jasmine Graves, Natalia Linos, Mary T Bassett. Structural racism and health inequities in the USA: evidence and interventions. Lancet. 2017;389(10077):1453-63.
Bailey ZD, Feldman JM, Bassett MT. How Structural Racism Works — Racist Policies as a Root Cause of U.S. Racial Health Inequities. N Engl J Med. 2021;384(8):768-73.
Paredes CL. Multidimensional Ethno-racial Status in Contexts of <i>Mestizaje</i> : Ethno-racial Stratification in Contemporary Peru. Socius. 2018;4:237802311876200.
Telles E, Garcia D. Mestizaje”and Public Opinion in latin America. Latin American Research Review. 2013;48(3):130-52.
Nuru-Jeter AM, Michaels EK, Thomas MD, Reeves AN, Thorpe RJ, LaVeist TA. Relative Roles of Race Versus Socioeconomic Position in Studies of Health Inequalities: A Matter of Interpretation. Annual Review of Public Health. 2018;39(1):169-88.
Blank RM, Dabady M, Citro CF, National Research C. Measuring racial discrimination. Washington, DC: National Academies Press; 2004 2004. 317 p.
Williams DR, Lawrence JA, Davis BA. Racism and Health: Evidence and Needed Research. Annu Rev Public Health. 2019;40(1):105-25.
Organización Panamericana de la S. Estrategia regional y plan de accion para un enfoque integrado sobre la prevencion y el control de la enfermedades cronicas. Washington: OPS; 2007 2007.
Giraldo GP, Joseph KT, Angell SY, Campbell NRC, Connell K, DiPette DJ, et al. Mapping stages, barriers and facilitators to the implementation of HEARTS in the Americas initiative in 12 countries: A qualitative study. J of Clinical Hypertension. 2021;23(4):755-65.
World Health Organization (2018). Summary tables of mortality estimates by cause, age and sex, globally and by region, 2000–2016. Available online at: https://www.who.int/data/gho/data/themes/mortality-and-global-health-estimates.
Carrington SJ, Romero-Alvarez D, Coral-Almeida M, Vela A, Henríquez-Trujillo AR, Mascialino G. Ethnodemographic characterization of stroke incidence and burden of disease in hospital discharge records in Ecuador. Front Neurol. 2023;14:1059169.
Espinosa De Ycaza AE, Chen Cardenas SM. Obesity and Metabolic Syndrome in Latin America. In: Ahima RS, editor. Metabolic Syndrome. Cham: Springer International Publishing; 2023. p. 1-14.
Maternal Health Analysis of Women and Girls of African Descent in the Americas. 2023;27. Available from: https://www.unfpa.org/sites/default/files/pub-pdf/UNFPA_MM_Analysis-July2023.
Santos LLM, De Aquino EC, Fernandes SM, Ternes YMF, Feres VCDR. Dengue, chikungunya, and Zika virus infections in Latin America and the Caribbean: a systematic review. Revista Panamericana de Salud Pública. 2023;47:1.

Box 1. Key definitions used in the Data Initiative for the Analysis of Racial/ Ethnic Health Inequalities in the Pan American Region: Protocol for a series of Scoping Reviews for the Pan-DIASPORA project.

Afro-descendant: refers to people belonging to various “Black” cultures who are descendants of Africans, including slavery survivors and other Africans from the diaspora.

Ethnicity: Refers to a complex social construct that influences on social identity. (35) It is related to common lineage, cultural practices, language, and experiences which often are self-defined. (36) Traditions that are transmitted from ancestors and are learned since childhood. (12)

Health disparities: Refers to an avoidable difference in the burden of diseases or opportunities to obtain optimal health, experienced by social constructs social disadvantaged populations. (37)

Health Inequity: Refers to unfair, preventable differences in health status among groups. According to the WHO health inequalities are “systematic differences in health status between different socio-economic groups, that are socially produced and modifiable”. (38)

Intersectionality: Refers to a social theory that assesses non-additive effects of race and ethnicity, improves validity to the heterogeneity of effects that are produced by health inequalities; provides a reconceptualization of identity to denote the distinctive ways (places, times, and perspectives) in which race has been framed among different dimensions. (39-42)

Institutional Racism: Refers to racial attitudes and myths among ethnic groups within the time and have been understood as behavioral practices that marginalize human worth among ethnic groups . (43)

Structural racism: Refers to “the totality of ways in which societies foster racial discrimination through reinforcing systems of housing, education, employment, income, benefits, credit, health care and criminal justice. These patterns and practices in turn reinforce discriminatory beliefs, values, and distribution of the resources”. (44) These processes of racism can be related to policies that provide advantages to racial groups that are seen as superior, and disadvantaged racial groups that are viewed as inferior. (45)

Mestizo: Refers to an ideology that stresses a fusion of two concepts: i) principle of national development; ii) intermarriage principle which refers to a person of mixed ancestry (e.g. White European with Indigenous). (46, 47)

Race: Refers to a social and political construction, commonly used to describe a group of people who share phenotypic characteristics, among them are skin color and facial features. It has been based on ideologies of inferiority that still are present. The use of race and racial categories is a marker of racism and not a biological maker of genetic make-up. (12, 48)

Racial Discrimination: Refers to the unequal or differential treatment of race that puts racial groups at a disadvantage, which is inadequately justified. (49)

Racism: Refers to a system created due to a social construction; based on ideas of inferiority which devalue and disempower the distribution of resources and indicators affecting social groups that have been categorized by “race”. (50)

White: In the context of Latin America, a white individual refers to people with European ancestry (Spaniards, Portuguese, Italian, French, etc.) and white skin color, without known mixing with Afro-descendants or Indigenous people.

Box 2. Rationale for selecting the health outcomes.

Cardiovascular diseases are the main cause of death worldwide and, are attributed to 31% of all deaths in Latin America and the Caribbean. In 2016,(51) the World Health Organization reported 28.1% of the total non- communicable diseases (NCD) mortality due to cardiovascular diseases. (52) Stroke is the second most common cause of death and disability-adjusted life years worldwide. (53) There are differences reported in the burden of stroke by ethnic groups. (54) In 2021, PAHO reported a higher incidence of chronic comorbidities such as Arterial Hypertension and diabetes in comparison with non-afro-descendant groups and its relationship due to unfavorable living conditions. (16) In addition, obesity rates are increasing in parallel with the prevalence of type 2 diabetes mellitus as there is a reduction in age-adjusted mortality rates from cardiovascular diseases. (55) Health inequities may be represented in the barriers to early detection and adequate treatment of comorbidities related.

Maternal mortality ratio is an indirect indicator of inequalities, living conditions, and health. Afro-descendant women are at a disadvantage and at higher risk. Among the Latin American Countries, in the last 20 years, the maternal mortality rates have been higher in Brazil, Colombia, and Ecuador. From 2016 to 2020 LAC had an increase in 15% in maternal mortality according to PAHO/WHO. (56) Neonatal and infant mortality rates have shown a steep decrease in Latin American countries over the past three decades. However, very few studies have investigated whether racial inequities have also decreased.

Vector-borne disease’s incidence has a significant impact on public health. It has been increasing the morbidity and mortality among Latin American countries. In 2019, more than 2.7 million cases of dengue were reported (PAHO). Factors such as the spatiotemporal distribution may be related to inequalities of resources among susceptible populations, the biological cycle of the vector among the environment’s higher spread, and outbreaks of ZIKV and DENV. (57)

Box 3. Specific research questions for each health outcome

Maternal, infant, and neonatal mortality.

· What variables have been considered when mapping the relationship between race and ethnicity and high maternal and infant mortality rates?

· Has it been proved by scientific literature that race and ethnicity disparities and inequities have an impact on rates of outcomes related to infant, neonatal and maternal mortality?

· How has institutional racism been measured within maternal, infant, and neonatal health services and practices?

Cardiovascular diseases and cardiometabolic risk factors

· How are race and ethnicity defined and measured in cardiometabolic risk factors and cardiovascular diseases studies in Latin American and Caribbean countries?

· What are the patterns and main mechanisms underlying racism and racial inequities in cardiovascular diseases and cardiometabolic risk factors in Latin American Countries and the Caribbean?

· What are the main race and ethnicity-based data sources available for cardiovascular diseases and cardiometabolic risk factors in Latin American countries and the Caribbean?

Communicable diseases - Dengue:

· Do studies on dengue among the pediatric population in the Pan American region include the assessment of race and ethnicity?

· To what extent are studies on dengue among the pediatric population including the assessment of race and ethnicity present and assessment of inequalities?

· Is there evidence of racial and ethnic inequalities in pediatric dengue? If so, how was the inequality assessed and reported?

Communicable diseases - Zika:

· Do studies on Zika viral infection and CZS include race or ethnicity variables? If so, how are these variables defined and operationalized across the literature?

· What methods and parameters are used to measure Zika and CZS outcomes, and how is the population of these studies defined? What are potential sources of bias in these studies, and how are these biases addressed?

· Do studies conduct inequities analysis on Zika outcomes? If so, what methods are used to conduct this analysis? What study designs, which variables?

· Is there existing evidence on the influence of racial or ethnic disparities on the differential outcomes of Zika infection among pregnant women and their offspring?

No competing interests reported.

Download PDF

Version 1

posted

You are reading this latest preprint version

Data Initiative for the Analysis of Racial/ Ethnic Health Inequalities in Latin American and Caribbean countries: Protocol for a series of Scoping Reviews

Status:

Version 1

Abstract

Figures

BACKGROUND

Pan-DIASPORA Project: Mapping Racial/Ethnic Health Inequities in Latin America

METHODS

Overall Research questions

Working groups and health outcome-specific research questions

Eligibility Criteria

Study Records:

Data analysis

Quality appraisal

Ethics

Consultation

Dissemination Plan

DISCUSSION

Limitations

CONCLUSION

DECLARATIONS

REFERENCES

Boxes

Additional Declarations

Supplementary Files

Status:

Version 1