Making Human Subject Protection Training Community Responsive: Experiences Delivering on the Community-Based Participatory Research Promise

Abstract

The purpose of this article is to share experiences in developing and implementing a customized human subject research curriculum, which was community responsive and addressed IRB requirements.

Are perceptions of community safety associated with respiratory illness among a low-income, minority adult population?

“…Sampled households were randomly selected. Data was collected by trained bi-lingual community members using a community based participatory research approach [40], which contributed to a high response rate, a notable strength, in a majorly Latino low income target population, with many facing immigration challenges. In addition, it is an advantage to be able to assess psychosocial stressors measured at an individual-level rather than solely relying on census block-level data or use of administrative data.…”

“…It consists of several sections including questions pertaining to demographics, description of household socioeconomic status, history of doctor-diagnosed illnesses, respiratory symptoms, hearing impairment, use of medications, health care utilization, occupational and residential histories, smoking status/history, indoor sources of air pollution, and perceptions of their community (Additional file 1). Survey administration, in a personal interview format to address low reading levels, was delivered by trained, bi-lingual community health workers (as part of our CBPR approach) from the study’s local community partner, a non-profit environmental justice organization [40]. …”

Bringing the IRB into the Community: A New Framework for the Ethical Regulation of CBPR

“…It evaluated an existing CBPR study that was done in California by Loma Linda University, and it critiqued their process to determine what methods are best suited for CBPR research and board approval [17]. Researchers found that, in many cases, IRBs were ill-equipped at reaching out to community-based researchers because of language/cultural barriers, lack of understanding of what types of intervention they wanted to adapt, and lack of resources.…”

“…Researchers found that, in many cases, IRBs were ill-equipped at reaching out to community-based researchers because of language/cultural barriers, lack of understanding of what types of intervention they wanted to adapt, and lack of resources. Furthermore, the IRB did little to fully understand the effects of using human subjects for an intervention could have on the entire community [17]. The study highly recommended more language-based training programs for both researchers and IRB board members to more effectively communicate their concerns.…”

“…It also made recommendations for training individuals to be more culturally competent and comfortable in working with the community while adhering to IRB guidelines. The university was open to these recommendations and acknowledged that something needed to be changed in this type of evaluation and training process to be more prepared when researchers engaged with the community [17][18][19][20].…”