Training in Research Ethics and Standards for Community Health Workers and Promotores Engaged in Latino Health Research

Abstract

A model frequently used to implement community‐based research involves engaging local community health workers who are trusted members of the community and familiar with local customs, language, and culture. In Spanish‐speaking communities, the CHWs are also known as promotores de salud (“health promoters”). Depending on the study design and nature of the research, promotores facilitate research through community outreach, instrument design, participant recruitment, intervention delivery, data collection, and other research‐related tasks. In 2000, the National Institutes of Health published a regulation requiring training of “key personnel” named on NIH‐supported research involving human subjects. Regardless of whether promotores are technically designated as key personnel on a particular study, they may benefit from training in research ethics. Unfortunately, the educational programs designed for academic researchers in response to the NIH mandate were poorly aligned with the needs of promotores and not suited for learning about human research ethics applied to the community health setting. For example, many promotores in our California‐Mexico border region are monolingual Spanish speakers who have no formal academic research training. Therefore, we set out to develop a training alternative appropriate to our local CHWs. In this essay, we provide overviews of the relevant instructional design principles and our formative research process, including examples of key findings.

Building Research Integrity and Capacity (BRIC): An Educational Initiative to Increase Research Literacy among Community Health Workers and Promotores

“…Community Health Workers (CHWs), also known as Promotores de Salud, are natural leaders and advisors who share the language, customs, ethnicity, and life experiences of the residents of their local community ( 5 – 9 ). A CHW may be engaged as a volunteer or paid staff to deliver health services in hard-to-reach urban and rural communities where health disparities are prevalent ( 5 – 9 ). A National Workforce Study conducted in 2007 estimated the number of CHWs in the United States (US) at 86,000 ( 9 ).…”

“…Over the past 50 years, CHWs in the US have become more involved with planning and implementing community-based research studies, which may involve serving as a community liaison, assisting with participant recruitment, obtaining informed consent, implementing an intervention, collecting data and, in some cases, reporting study results ( 5 – 8 ). Over the past decade, as the community-based participatory research (CBPR) approach has gained acceptance, CHWs are increasingly considered to be part of the research team ( 5 , 10 ). Given their role as front-line research workers, it is remarkable that CHWs have been largely overlooked in most conversations about, and approaches to, research ethics or responsible conduct of research (RCR) education.…”

“…Given their role as front-line research workers, it is remarkable that CHWs have been largely overlooked in most conversations about, and approaches to, research ethics or responsible conduct of research (RCR) education. Recognizing the need to increase research literacy and capacity among CHWs, we designed a research ethics training program to educate those facilitating community health research ( 5 ). Our overarching aim is to foster research literacy and understanding of responsible research practices across the continuum of community research (i.e., community-based, community-engaged, and participatory research) via educational initiatives informed by stakeholders who train or supervise novice research support staff.…”

“…During our early formative research, we learned that CHWs receive little or no formal academic training in research methods or on the ethical dimensions of human research protections ( 5 ). The lack of consistent and foundational training in the scientific method and human research protections may contribute to decisions in the field that compromise the integrity of research studies in which CHWs are involved ( 5 , 8 ). For example, when CHWs assist in research, they may be asked to randomly assign subjects to different conditions of an intervention.…”

“…The O’Brian et al findings document a gap that we began to explore in 2002, shortly after the US National Institutes of Health (NIH) published a requirement for key personnel to receive training in human research protections. While CHWs may not rise to the NIH definition of key personnel, we prioritized development of training to provide CHWs with culturally appropriate and relevant training on responsible and ethical research practices ( 5 ).…”