Practice of reporting social characteristics when describing representativeness of epidemiological cohort studies – A rationale for an intersectional perspective

Abstract

Representativeness has been defined as the degree of similarity of a study population compared to an external population. To characterize a study population, both health-related and social or demographic features should be considered according to current guidelines. However, little guidance is given on how to describe social complexity of study populations when aiming to conclude on representativeness. We argue that sociological concepts should inform characterizations of study populations in order to increase credibility of conclusions on representativeness. The concept of intersectionality suggests to conceptualize social location as a combination of characteristics such as sex/gender and ethnicity instead of focusing on each feature independently. To contextualize advantages of integrating the concept of intersectionality when investigating representativeness, we reviewed publications that described the baseline population of selected epidemiological cohort studies. Information on the applied methods to characterize the study population was extracted, as well as reported social characteristics. Nearly all reviewed studies reported descriptive statistics of the baseline population and response proportions. In most publications, study populations were characterized according to place of residence, age and sex/gender while other social characteristics were reported irregularly. Differential patterns of representativeness were revealed in analyses that stratified social characteristics by sex/gender or age. Furthermore, the included studies did not explicitly state the theoretical approach that underlay their description of the study population. Intersectionality might be particularly fruitful when applied to descriptions of representativeness, because this concept provides an understanding of social location that has been developed based on situated experiences of people at the intersection of multiple axes of social power relations. An intersectional perspective, hence, contributes to approximate social complexity of study populations and might contribute to increase validity of conclusions on representativeness of population-based studies.

Novel stepwise approach to assess representativeness of a large multicenter observational cohort of tuberculosis patients: The example of RePORT Brazil

“…This is beneficial for both cohorts. For the smaller RePORT-Brazil cohort, this supports the generalizability of findings from current and future translational studies ( Jaehn et al, 2020 ). For the larger SINAN cohort, it means that smaller, less-expensive population-based studies in RePORT-Brazil may provide important data that can inform TB treatment strategies throughout all of Brazil.…”

“…This can result in erroneous estimates, and consequently lead to the adoption of inappropriate actions or strategies ( Kukull and Ganguli, 2012 ). Thus, it is of critical importance to evaluate the representativeness of a study population and whether results from the study population reflect what occurs in the larger population ( Jaehn et al, 2020 ; Kukull and Ganguli, 2012 ).…”

Analysis of Latina/o Sociodemographic and Health Data Sets in the United States From 1960 to 2019: Findings Suggest Improvements to Future Data Collection Efforts

“…Existing gaps in data collection systems thwart scientific advancement, health equity, and the prioritization of the allocation of resources to meet emerging challenges. Improving the collection of key indicators will yield specific knowledge for understanding the associations among intersectional variables and health disparities (Burgos et al, 2017; Jaehn et al, 2020). Systematic collection and availability of high-quality data play an important role in planning preventive interventions and relevant national and local policy (Richardson, 2016; J.…”

“…Over the past several decades, public health and social scientists have focused more on health outcomes across groups by race/ethnicity rather than within group differences, resulting in the absence of adequate data for investigating the social determinants of Latina/o disparities by subgroup (Penman-Aguilar et al, 2016). The development of strategic interventions to reduce health disparities and promote health equity among Latino populations requires consistent comprehensive data collection of social determinants and sociodemographic factors to adequately capture population health inequities (Dorsey et al, 2014; Dorsey & Graham, 2011; Jaehn et al, 2020; Landrine & Corral, 2014).…”

Sex and gender specific health topics in medical student learners: pulse check eight years later

“…helps to obtain more nuanced results [ 1 ]. A recent work by Jaehn et al argues for the importance of considering intersectionality when determining study representativeness and identifies how crucial it will be for future research to use an intersectional approach to draw accurate conclusions about study cohorts to improve future practice guidelines [ 30 ].…”