Community Partnered Research Ethics Training in Practice

Yonas, Michael A.; Jaime, Maria Catrina D.; Barone, Jean; Valenti, Shannon; Documét, Patricia I.; Ryan, Christopher M.; Miller, Elizabeth

doi:10.1177/1556264616650802

Cited by 25 publications

(19 citation statements)

References 13 publications

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“…For example, CIRTification is a human research ethics training program designed specifically for community research partners ( Anderson, 2015 ). Efforts have been made to promote acceptance of these more accessible, flexible, and engaging processes to teach human subjects’ research and obtain institutional review board certification ( Yonas et al, 2016 ). Nevertheless, uptake of these community-centric programs by university IRB has been limited.…”

Section: Discussionmentioning

confidence: 99%

Preliminary Evaluation of a Citizen Scientist Educational Curriculum Aimed at Engaging Black Men in Lung Cancer Early Detection Screening

et al. 2022

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This article describes an educational program to engage African American men as citizen scientists (CSs) and future research partners in a lung cancer screening project. We provide an overview of the curriculum used, the structure and format of the educational sessions, and associated educational outcomes. Furthermore, we describe lessons learned in the engagement of African American men as CS in community-based lung-health equity research. The CS educational program included five group-based sessions delivered through zoom. The educational curriculum was adapted from the University of Florida Citizen Scientist program and tailored to address lung health and the contextual experiences of African American men. Each session lasted 90 minutes. Pre- and post-test measures were collected to examine changes in knowledge, comfort, health literacy, research interests, and medical mistrust. Eight African American men completed the CS educational program. Attendance rates were high for each session (100%). Seven participants completed additional human subject research certification. Improvements were observed from pre- to post-test in participants’ level of knowledge, comfort, and health literacy but not medical mistrust. CS reported the most interest in participating in research aimed to identify important community strengths and problems. Study findings suggest that it was feasible to deliver an online citizen scientist educational program designed to prepare participants to serve as partners in a lung cancer screening intervention for African American men. Results suggest the educational program has the potential to improve key outcomes including completion of regulatory training and increased research-related knowledge, comfort, and health literacy.

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Section: Discussionmentioning

confidence: 99%

Preliminary Evaluation of a Citizen Scientist Educational Curriculum Aimed at Engaging Black Men in Lung Cancer Early Detection Screening

et al. 2022

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“…Due to their anticipated extensive involvement in data processing and analysis, G.L. conducted additional training to enhance their understanding of and adherence to research ethics using a community-partnered ethics training (Yonas et al, 2016) as well as the specific data analytic procedures described below.…”

Section: Methodsmentioning

confidence: 99%

“Different but connected”: Participatory action research using Photovoice to explore well-being in autistic young adults

Lam

Holden

Fitzpatrick

et al. 2020

Autism

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Past research has largely focused on the negative aspects of well-being of autistic young adults during the post-school transition. Research that meaningfully includes autistic individuals and captures their perspectives of positive well-being is essential for stakeholders to better understand how to provide services that respond to the needs and wants of the autistic community. In the current study, 14 autistic young adults in a post-school transition program participated in a Photovoice project and used photos to express their ideas about well-being. A participatory action research approach was used to support participants’ active engagement in the research processes and to encourage meaningful expression of their first-person perspectives. Results revealed an account of well-being reflecting expressions of individuality and growth, the significance of having close relationships, and a sense of connection with the community. This study has implications for research and practice that promotes well-being among the autistic community using approaches that are ethically informed and inclusive of autistic voices. Lay abstract Past research has mainly focused on autistic people’s deficits and poor outcomes compared to other groups of people. Little is known about their positive life experiences, and how to support them to achieve a higher quality of life. It is important to include autistic individuals in research so that they can influence how their voices are represented in a meaningful way and how the research results will be useful to them. In this study, a university researcher collaborated with 14 autistic young adults in a post-school transition program to design and run the research, collect and analyze the data, and use the results to create a presentation to the community. Specifically, the participants took photos in daily life and discussed their ideas about what a good life means to them. Results showed that these young adults described themselves as uniquely and different, but they were eager to learn and adapt. They also valued their relationships with their families, friends, and animals around them, as well as the community at large. This research shows that autistic individuals have important perspectives to share and knowledge to contribute when they are given the opportunities to participate in different aspects of research. The findings will be useful in developing services and influencing policies that promote well-being among autistic adults.

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“…Findings suggest vignettes could be effective teaching resources. For instance, the Community Partnered Research Ethics Training (CPRET) program developed at the University of Pittsburgh engages academic and community partners to develop scenarios of desirable and less desirable research situations that allow them to articulate ethical priorities and examine conflicts (Yonas et al, 2016). Although we included a diverse group of researchers, their responses demonstrated high consistency quantitatively (e.g., that three of five vignettes had preferred solutions across two different panels) and qualitatively (e.g., a common theme of emphasizing decision-making process), suggesting diverse teams can work through dilemmas to reach common conclusions about ethical choices.…”

Section: Discussionmentioning

confidence: 99%

Ethics and Science in the Participatory Era: A Vignette-Based Delphi Study

Bromley

Mikesell

Khodyakov

2017

Journal of Empirical Research on Human Research Ethics

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Participatory researchers rely on relationship-based ethical considerations to address ethical challenges, but little is known about how these considerations shape day-to-day decision-making. We presented vignettes describing ethical dilemmas to health researchers with varying degrees of experience in participatory research in an online modified-Delphi panel. Panelists rated potential solutions to dilemmas and provided rationales for choosing solutions in text boxes and discussion boards. Panelists agreed on a preferred solution for three of five vignettes. Panelists indicated that ethical research decision-making should be inclusive of diverse perspectives. Panelists prioritized scientific goals above participatory ones and viewed tenets of scientific validity as value-free. Panelists indicated that participatory research ethics would be difficult to codify, but that vignette-based learning could support didactic objectives.

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Community Partnered Research Ethics Training in Practice

Cited by 25 publications

References 13 publications

Preliminary Evaluation of a Citizen Scientist Educational Curriculum Aimed at Engaging Black Men in Lung Cancer Early Detection Screening

Preliminary Evaluation of a Citizen Scientist Educational Curriculum Aimed at Engaging Black Men in Lung Cancer Early Detection Screening

“Different but connected”: Participatory action research using Photovoice to explore well-being in autistic young adults

Ethics and Science in the Participatory Era: A Vignette-Based Delphi Study

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