The ethnic variable in health information systems

According to the World Bank (1), in most countries of the region, although various mechanisms have been put in place to identify cultural diversity, there is insufficient qualitative and quantitative information or disaggregated data to consider the health situation of indigenous, Afro-descendant, Roma and other ethnic populations, and different ways of identifying ethnicity are used in censuses, health records and surveys, which does not allow for effective comparison of data (2).

For this reason and taking as a reference the provisions of ILO Convention 169 (3) and in compliance with the Millennium Development Goals (MDGs Millennium Development Goals (MDGs) (who.int)), the World Health Organization (WHO), through its regional office for the Americas, the Pan American Health Organization (PAHO), has been promoting, since the end of the 20th century, the inclusion of the variable of ethnicity (self-recognition) in the health information systems of the region (registries, surveys, observatories, statistics and health systems, among others) (4). This exercise has been carried out with the support of the Economic Commission for Latin America and the Caribbean (ECLAC) and the United Nations Population Fund (UNFPA) (3).

The inclusion of this variable would make it possible not only to recognize and make visible the ethnic and cultural diversity that exists in the countries of the region (5), but also to analyze the health situation of indigenous, Afro-descendant, Roma and other ethnic populations and the diseases that affect them, to produce disaggregated data and epidemiological indicators that would allow sociocultural epidemiological profiles to be drawn up and their health situation to be compared with that of the rest of the population. As a result, health inequalities will be identified and existing equity gaps will be addressed (6) (7); inputs will be provided for the formulation and implementation of specific, targeted, and socio-culturally appropriate public policies for this population, with an intercultural approach.

In a study conducted in six Argentine provinces in 2011 (Cuyul et al.), the health professionals and community members interviewed indicated that the inclusion of the variable of ethnicity could become an alternative to avoid discrimination and promote special attention to community members, gradually overcome cultural barriers and guarantee a qualitative improvement in health care, as well as improve the accuracy and quality of the data collected, fill existing gaps through programmed and targeted actions, facilitate the identification of diseases prevalent in the indigenous population, identify risk factors, and design and plan specific health policies. In this way, ethnicity would become a social determinant of health (8), going beyond the simple consideration of this variable in the context of poverty to become a cross-cutting, multidimensional and contextual variable to be used as a tool for intercultural analysis, planning and management.

However, according to the Colombian National Planning Department (DNP), the mere inclusion of the variable in national information-gathering instruments and official databases is not enough, unless officials are made aware of the importance of collecting data in a disaggregated manner: “All entities at the national, regional and local levels should adapt their formats and procedures to collect data disaggregated according to the variable of ethnic belonging (self-identification) and enable the population itself to carry out its self-diagnosis as a collective subject” (9).

According to a study carried out by ECLAC in 2008, of the nineteen countries that conducted the 2000 census, fifteen included questions on ethnicity in census forms and household surveys to identify Indigenous peoples, but not all of them to identify Afro-descendant populations. Only eight of these fifteen countries (Brazil, Colombia, Costa Rica, Ecuador, El Salvador, Guatemala, Honduras and Nicaragua) have included categories to identify both indigenous and Afro-descendant populations; Cuba includes only Afro-descendants; and Colombia and Costa Rica have included other ethnic groups, such as the Rom people -in Colombia- and other ethnic, linguistic and cultural groups, such as the Chinese -in Costa Rica- (10 and 11).

For the 2010 round of censuses, 12 countries included the Afro-descendant self-identification variable in their census forms: Argentina (2010), Bolivia (Plurinational State of) (2012), Brazil (2010), Costa Rica (2011), Cuba (2012), Ecuador (2010), Honduras (2013), Panama (2010), Paraguay (2012),10 Puerto Rico (2010), Uruguay (2011), and Venezuela (Bolivarian Republic of) (2011). As of 2018, the Afro-descendant self-identification option was pending inclusion in the census ballots of Colombia, El Salvador, Guatemala, Nicaragua, and Peru (12).

Notwithstanding these advances in the incorporation of ethnic identification variables in population and housing censuses and administrative records in the region’s countries, in terms of health information ECLAC (2013) considers that:

“…less progress is observed in the area of surveys and vital statistics. In these last two sources, progress and achievements are variable; in general, they are partial experiences of incorporating variables of ethnic distinction in at least one form of vital statistics -mainly the birth registry-, or the health registry -generally medical records-, or located in some territory or health center -especially in areas of Indigenous concentration” (7).

In addition, the ethnic identification criteria used in the different sources of information are not always consistent, which does not allow an accurate estimation of the existing ethnic population or comparisons of their health situation with the national population (13). 

In this context, when the member countries of the Pan American Health Organization (PAHO/WHO) adopted the Policy on Ethnicity and Health in September 2017, they approved the inclusion of the ethnic variable in United Nations health projects and recommended that countries present health information disaggregated by ethnic group (13).

On the other hand, the Andean Intercultural Health Policy, ORAS CONHU (2019), states that: 

“The countries of the subregion will take measures to strengthen information systems by including the variable of “belonging” or “self-recognition” in all statistical records (surveys, observatories, vital statistics) of health services, as well as the definition of indicators that make it possible to identify the social determinants of health, the organization and management of health services, the health situation and the sociocultural epidemiological profile of these peoples, exploring the most valid and consistent definition criteria agreed upon with the peoples themselves and developing training processes for institutional health personnel to avoid institutional underreporting.” (14)

References.

1. Htun Mala. Intersectional disadvantage and political inclusion: how to get more Afro-descendant women into elected office in Latin America [Internet]. 2012. Inter-American Development Bank. [accessed January 27, 2017]. Available at: http://centroderecursos.cultura.pe/sites/default/files/rb/pdf/Desventaja%20interseccional%20e%20inclusion%20politica%20Como%20lograr%20que%20un%20mayor%20numero%20de%20mujeres%20afrodescendientes%20ocupe%20cargos%20de%20eleccion%20popular%20en%20AL.pdf
2. World Bank. Indigenous Latin America in the 21st century [Internet]. 2015. World Bank [accessed January 27, 2017]. Introduction, p. 13-16. Available at:  http://documents.worldbank.org/curated/en/541651467999959129/pdf/98544-WP-P148348-Box394854B-PUBLIC-Latinoamerica-indigena-SPANISH.pdf 
3. Rangel, Marta. “The inclusion of indigenous and Afro-descendant peoples in health information systems in the context of the COVID-19 pandemic” [Internet]. 2022. Economic Commission for Latin America and the Caribbean (ECLAC). Seminarios y Conferencias Series, No. 98 (LC/TS.2022/142). Available at: La inclusión de pueblos indígenas y afrodescendientes en los sistemas de información de salud en el marco de la pandemia de COVID-19 | ECLAC.
4. Cuyul Andrés, Rovetto María, Specogna Mariana. Indigenous peoples and health information systems: The ethnic variable in six Argentine provinces. 2011. Argentine Journal of Public Health, 2(7):12-18. Available at: Pueblos indígenas y sistemas de información en salud: la variable étnica en seis provincias Argentinas | Revista Argentina de Salud Pública (msal.gov.ar).
5. Ministry of Social Protection – General Directorate of Social Promotion / Pan American Health Organization. Insumos para la conceptualización y discusión de una política de protección social en salud para los grupos étnicos de Colombia (Inputs for the conceptualization and discussion of a social protection policy in health for ethnic groups in Colombia). [Internet]. Published in 2004. Nuevas Ediciones Ltda. 122 pp. Available at: GRUPOS ETNICOS.pmd (ohchr.org)
6. Carrioni Denyer, Gina. Intercultural health, socioculturally appropriate health services, models or own and intercultural health systems? The experience in the formulation of a public health policy for indigenous peoples in Colombia. Paper 3rd International Conference of the Society for Medical Anthropology (SMA 2020) – Havana, Cuba. March 9-12, 2019. 
7. Economic Commission for Latin America and the Caribbean/Pan American Health Organization/United Nations Population Fund (ECLAC/PAHO/UNFPA), “Guidelines for including the identification of indigenous peoples and Afro-descendants in health records,” Project Documents (LC/W.569), Santiago, 2013. 75 pp. Available at: Guidelines for including the identification of indigenous peoples and Afro-descendants in health records (cepal.org).
8. Cuyul A, Rovetto ME, Specogna M, Abriata G. Ethnic approach in health information systems: the incorporation of the intercultural approach in health information systems in the provinces of Jujuy, Salta, Formosa, Chaco, Misiones and Neuquén. [Internet] 2010. Available at: www.saludindigena.org.ar. [Last access: 03/06/11].
9. National Planning Department (DNP). Guide for the incorporation of the ethnic variable and the differential approach in the formulation and implementation of plans and policies at the national and territorial levels. 2012. Available at: https://colaboracion.dnp.gov.co/CDT/Desarrollo%20Territorial/Guia%20para%20la%20incoporaci%C3%B3n%20de%20la%20variable%20%C3%A9tnica.pdf
10. Del Popolo, Fabiana. Indigenous and Afro-descendant peoples in data sources: experiences in Latin America. [Internet] 2008. Economic Commission for Latin America and the Caribbean (ECLAC). Printed in United Nations. Available at: Indigenous peoples and Afro-descendants in data sources: experiences in Latin America [ECLAC] 2008.
11. Oyarce Ana María, Del Popolo Fabiana. Binational workshop Ethnic approach in health data sources: experiences in the area of the Mapuche people of Chile and Argentina. Recommendations for future development in the context of the Americas. [Internet] 2008. Economic Commission for Latin America and the Caribbean (ECLAC). Printed in United Nations. Available at: Enfoque etnico-Oyarce-DelPopolo (cepal.org).
12. ECLAC (2017b), “Social Panorama of Latin America 2016.” [Internet] (LC/PUB.2017/12-P). United Nations publication, Sales No. E.17.II.G.6. Available at: Social Panorama of Latin America 2016 (cepal.org).
13. Márquez Lina, Plana Amalia, Villarroel María Cecilia. Maternal mortality in indigenous peoples and data sources. Scopes and challenges for its measurement in Latin American countries. 2017. ECLAC/OPS/UNFPA. Population and Development Series No. 118: Mortalidad materna en pueblos indígenas y fuentes de datos: alcances y desafíos para su medición en países de América Latina | ECLAC.
14. Fernández Juárez, Gerardo. Cultures, ethnicities and afflictions. Amerindian perspectives in Intercultural Health [Internet]. 2019. Asclepio, 71(1): p259. Available at: https://doi.org/10.3989/asclepio.2019.11
15. Andean Health Organization ORAS CONHU. Andean Intercultural Health Policy. [Internet] 2019. 24 pp. Available at: Andean intercultural health policy :::: ORAS CONHU / Organismo Andino de Salud – Convenio Hipólito Unanue ::.