Willingness to Participate in Health Research Among Community-Dwelling Middle-Aged and Older Adults: Does Race/Ethnicity Matter?

Abstract

Introduction Older adults, including racial and ethnic minorities, are underrepresented in research. As the US population ages, the number of older racial and ethnic minority individuals will increase. Including these individuals in research is an important step towards reducing health disparities. Methods We used data from HealthStreet, a University of Florida community engagement program which uses community health workers to assess the health of the community, to assess willingness to participate in different types of health research by race/ethnicity. Descriptive statistics and logistic regression models were used to assess willingness to participate among adults aged 50 and older, by race/ethnicity (n = 4694). Results Our sample was 42.0% non-Hispanic White, 52.8% non-Hispanic Black, and 5.2% Hispanic. Non-Hispanic White participants reported more past research participation than non-Hispanic Black and Hispanic participants (28.7% vs. 19.0% and 19.2%, respectively). Compared with non-Hispanic White participants, non-Hispanic Black participants were less willing to participate in most types of studies, while Hispanic participants were less willing to participate in studies that might be seen as invasive (required blood sample, genetic sample, or participants to take medicine, or use of medical equipment). Conclusions Our study provides investigators with a general profile of research preferences by race/ethnicity; compared with non-Hispanic White individuals, non-Hispanic Black individuals are less willing to participate in most studies, while Hispanic individuals are less willing to participate in studies that may be seen as invasive or demanding. It is imperative to include diverse older adults in health research. By tailoring research based on preferences we can improve recruitment in underrepresented populations.

Volunteer Bias and Female Participation in Exercise and Sports Science Research

“…Finally, factors such as age (Sheikh & Mattingly, 1981;Teschke et al, 2010;Van Wieren-de Wijer et al, 2009), race/ethnicity (Braunstein et al, 2008;Liu et al, 2019;Milani et al, 2020;Shavers et al, 2002;Webb et al, 2019;Wendler et al, 2006), time constraints (Markanday et al, 2013;Stuart et al, 2019), and financial compensation (Bentley & Thacker, 2004;Ding et al, 2007;Grady, 2005;Ranjan et al, 2019) sometimes correlate with or impact willingness to participate in research. Future research can examine if these factors also influence participation in specific ESS procedures and if they interact with sex to impact participation.…”

The Importance of Biobehavioral Research to Examine the Physiological Effects of Racial and Ethnic Discrimination in the Latinx Population

“…As researchers decide to include biomarkers in research on Latinx populations it is important to ensure that the biomarker can be measured through the collection of a specimen (e.g., saliva) deemed culturally acceptable in the community ( 157 ). Latinx persons may be less likely to participate in health-related research if it requires biological specimens (e.g., blood sample, genetic sample) or participants must use invasive medical equipment ( 158 ). Likewise, it is very important that the research team identify with the Latinx community and speak the participants' language (English, Spanish, and/or indigenous language) so that they can explain all collection procedures and clarify questions about biospecimen assays.…”

Implementing community-based participatory research among African Americans with serious and persistent mental illness: A qualitative study

“…African Americans are notably under-represented in research samples (Huang & Coker 2010;Milani et al 2020;Webb, Khubchandani, Striley & Cottler 2019;Zhang, Tsang, Wijeysundera & Ko 2013), which is not surprising, given the discrimination, ethical violations and mistreatment committed against African Americans by the research profession (Brandt 1978;Shavers, Lynch & Burmeister 2000). In the infamous Tuskegee experiments, which persisted over four decades through the early 1970s, researchers withheld life-saving medical treatment from African Americans infected with syphilis (Brandt 1978).…”