Educating citizen scientists can boost integrity of scientific research

Maria Barraza has been a Community Health Worker (CHW) for 25 years, providing health services and facilitating research studies in underserved areas where disparities are most prevalent. In her role, Barraza contributes to the development and implementation of community and clinic-based research studies.

Like many of her peers, Barraza has no formal academic training in study design or methods, yet is increasingly involved helping bridge cultural and linguistic gaps in research efforts. A recent study by researchers at University of California, San Diego School of Medicine reports that educating CHWs like Barraza and other "citizen scientists" can improve knowledge of basic research concepts and ultimately boost the integrity of scientific research.

The study was recently published online in the Journal of Microbiology & Biology Education.

"Community involvement in research has steadily increased over the past 50 years. A lack of knowledge in the role of a CHW, known as Promotores de Salud in the Latino community, can be detrimental to the core mission of a research study," said Camille Nebeker, EdD, assistant professor with the Department of Family Medicine and Public Health. "Our team designed and tested an educational intervention to train CHW/Promotores about the scientific method and study ethics. The goal was to increase awareness of the high standards of research and the importance of protocol adherence to obtain meaningful results."

The Building Research Integrity and Capacity (BRIC) program consists of eight modules available in English and Spanish. The program can be administered either as self-paced training or incorporated into a professional development session geared to a specific study. BRIC, which recently received an award by the Health Improvement Institute, addresses topics that include research design, reliability, random assignment and bias. It is an extension of an earlier program called Training in Research Ethics and Standards (TRES) and Basic Research Concepts.

"Without an adequate understanding of research or recognition that the work they are doing is part of a study, CHWs may make decisions that unintentionally compromise protocol and not realize how their actions influence the interpretation of data," said Nebeker.

CHWs in the United States have become more critical to scientific endeavors, serving as community liaisons, assisting with participant recruitment, obtaining informed consent, implementing an intervention, collecting data, and in some cases, reporting study results.

"We are not always informed of the details surrounding a study, and without knowing the big picture, we sometimes aren't able to address questions participants have. We needed a stronger training model so the CHWs know a study's protocols and goals and can do outreach more confidently," said Barraza. "Even when translated, research ethics training is not usually contextualized to community-based research and is written using terminology unfamiliar to the average CHW."

BRIC's overarching goal is to use innovative tools to give novice research facilitators more in-depth knowledge of how a study is conducted, their role and the importance of protocol adherence.

"Given their part as front-line research workers, it is remarkable that CHWs have been largely overlooked in most conversations about research ethics," said Nebeker. "It is important that academic partners take the initiative to facilitate the development of research-savvy citizens, including CHWs. Not doing so can ultimately influence the integrity of data, and subsequently, the development of influential policies."

After going through BRIC, Barraza says she is more prepared, with a fuller understanding of the studies being conducted and the importance of the role she plays.

"Before BRIC, I didn't always know what the goal of a study was or what the results were," said Barraza. "Now, I have a full concept of what is trying to be achieved, which helps me do my job more effectively. I know how my piece of the puzzle fits in."