Views of Academic and Community Partners Regarding Participant Protections and Research Integrity: A Pilot Focus Group Study

Abstract

When community partners have direct interaction with human research participants, it is important to consider potential threats to participant protections and research integrity. Few studies have directly compared the views of academic and community partners. This pilot focus group study explores the views of academic partners (APs) and community partners (CPs) regarding challenges to the protection of research participants and research integrity in community-engaged research (CEnR). Data are analyzed to understand how APs and CPs define and think about ethical problems and how meaning and analysis may differ between the two groups. Findings have implications for the development of research ethics training materials for academic-community research partnerships and IRBs; best practices for CEnR; and future research on ethical issues in CEnR.

Engaging populations living with vulnerable conditions in community‐based research: A concept mapping approach to understanding positive practices

“…From the results of the current study, along with previous research (e.g., Anderson, ; Kennedy et al., ; Tse et al., ), it is evident that building trusting relationships with partners is key for engaging diverse stakeholders and sustaining work in CBR. Funders can support research teams in establishing strong foundations for their work by offering a portion of project funds, such as through seed grants or partnership grants, devoted to evaluating university and community partner readiness, developing trusting relationships with stakeholders, and using research findings to affect policy change.…”

“…These are character‐ and relationship‐based approaches to ethics central to CBR principles (Banks et al., ). Building trusting relationships is key for engaging diverse stakeholders in CBR (Anderson, ; Kennedy, Vogel, Goldberg‐Freeman, Kass, & Farfel, ; Tse et al., ). Trust‐building interactions, including investing time in understanding and responding to participant needs and being involved in and accountable to communities (Tse et al., ), appear across clusters and reflect the collaborative nature of CBR (Savage et al., ).…”

“…There are numerous barriers that affect people's ability to participate in research (Anderson, ; Barratt et al. ; George et al., ; Schnirer & Stack‐Cutler, ).…”

“…There are numerous barriers that affect people's ability to participate in research (Anderson, 2013;Barratt et al 2013;George et al, 2014;Schnirer & Stack-Cutler, 2012). Respondents in our study recommended practices that support participation such as offering flexible participation scheduling, keeping participation time demands brief, and collecting data in places participants feel comfortable.…”

CIRTification : Training in Human Research Protections for Community-Engaged Research Partners

“…IRB approval was obtained from the UIC; results on the substantive issues identified are reported elsewhere. 7 Briefly, both community and academic partners reported dissatisfaction with existing human research ethics training programs primarily because they are delivered online, offer limited interactivity, and do not provide examples from CEnR. Although online programs certainly have advantages, community partners wanted training to be delivered in person and to be engaging and immediately relevant to their day-to-day, research-related roles and responsibilities.…”