Tailored human subjects protection training for community research partners is key

by Emily E. Anderson, PhD, MPH, Assistant Professor of Bioethics, Loyola University Chicago Stritch School of Medicine

Academic investigators who partner with communities to conduct research face many challenges. But many find that the rewards of collaborating, such as increased community trust and support and better recruitment and retention rates, are worthwhile. And communities benefit from these collaborations by receiving health-related programming, skill and capacity building, data, grants, and maybe even a few jobs.

There’s a lot of talk these days about community engagement in research—from community advisory boards providing input on project materials, to partner organizations helping to get the word out about participation opportunities or key findings—and the number of community-based institutional review boards (IRBs) is growing. Somewhat less attention has been paid to the involvement of community members in the day-to-day implementation of research studies, such as directly recruiting participants, obtaining informed consent, and collecting data. But when it comes to human subjects protections, this is where the proverbial “rubber hits the road.”

When community research partners with no previous research experience or training take on these roles, first and foremost, they need to be trained—not only so that they can do their job well, but also to comply with federal requirements. But most available research ethics training programs are primarily geared toward learners who possess some research experience and working knowledge of research methods – like graduate students or junior faculty. They do not usually address the unique context of community-engaged research, and therefore may not be well-received by community partners. A mismatch between the training needs of community partners and existing training programs can result in limited understanding of key concepts and rules. Community research partners may also feel disenchanted or uncertain about the research process if what they are learning isn’t directly relevant to what they will be doing.

Human research protections training should provide relevant, meaningful information and skills to help community partners translate their unique knowledge and skills to research collaborations. In order to help institutions and research teams around the nation meet this goal, the Center for Clinical and Translational Science (CCTS) at the University of Illinois at Chicago (UIC) developed CIRTification: Community Involvement in Research Training. CIRTification is designed specifically for community research partners with little or no prior research experience. CIRTification curriculum materials can be downloaded for free on our website. FAQs, materials, and more information to help you get started offering CIRTification to your community-engaged investigators and research teams are also available on our site.

Ideally, using tailored training materials like those available from CIRTification will not only teach community research partners about the importance of protecting research participants, but also enhance the overall contribution that they are able to make to their respective research teams towards the goal of becoming co-researchers. I welcome you to take a look and share what you think of these resources in the comments.

Emily Anderson is currently assistant professor in the Neiswanger Institute for Bioethics at the Loyola University Chicago Stritch School of Medicine. She developed CIRTification while she was working at UIC and expresses sincere gratitude for the input she received from a variety of community research partners, academic investigators, and IRB professionals.