%0 Journal Article
%T Promoting Equity, Diversity, and Inclusion in Surveys: Insights from a Patient-engaged Study to Assess Long COVID Healthcare Needs in Brazil.
%A Caldas B
%A Portela M
%A Stelson E
%A Singer S
%A Amaral T
%A Amaral C
%A Escosteguy C
%A Martins M
%A Tavares de Andrade CL
%A Soares L
%A Cornish F
%A Rosenthal M
%A Aveling EL
%J J Clin Epidemiol
%V 0
%N 0
%D 2024 Jun 14
%M 38880435
%F 7.407
%R 10.1016/j.jclinepi.2024.111423
%X <B>OBJECTIVE: </B>Long COVID (LC) refers to persistent symptoms after acute COVID-19 infection, which may endure for months or years. LC affects millions of people globally, with substantial impacts on quality of life, employment, and social participation. Ensuring access to effective, patient-centered care for LC demands evidence, grounded in inclusive representation of those affected by the condition. Yet survey studies frequently under-represent people with the most disabling disease presentations and racially and socio-economically marginalized groups. We aimed to describe a patient-engaged approach to developing a survey to inform public LC healthcare, and to assess its implementation in terms of enabling participation by diverse LC patients in Brazil.<BR><B>METHODS: </B>Survey development was iterative, achieved through an interdisciplinary collaboration among researchers including people living with LC, and grounded in three guiding principles: (1) evidence-based; (2) inclusive, intersectional, and patient-centered understanding of chronic illness and research participation; and (3) sensitivity to the context of healthcare access.<BR><B>RESULTS: </B>The product of our collaboration was a longitudinal survey using a questionnaire assessing: LC symptoms; their clinical and functional evolution; and impacts on quality of life, household income, health service access, utilization, and out-of-pocket expenses. We illustrate how we operationalized our three principles through survey content, instrument design, and administration. 651 participants with diverse LC symptoms, demography, and socio-economic status completed the survey. We successfully included participants experiencing disabling symptoms, Black and mixed race participants, and those with lower education and income.<BR><B>CONCLUSIONS: </B>By centering patient experience, our novel, principles-based approach succeeded in promoting equity, diversity, and inclusion in LC survey research. These principles guiding patient-engaged collaboration have broad transferability. We encourage survey researchers working on chronic illness and in other contexts of marginalization and inequality to adopt them.