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There are many important questions to consider when designing and implementing a substance use disorder clinical trial that engages diverse populations in Southern New Mexico. Domain 1 prepares you for what kinds of questions might come up when engaging community members about participating in clinical research. Subsequent domains will provide tools that then prepare you to most effectively engage the community with a strengths-based approach.
Before we get there, we want to let you know who this toolkit is designed for.
Researchers who are new to clinical trial research and want to learn more about how to talk with community members about research
Researchers who have experience with community engagement and are looking for new tools to increase diversity and inclusion among participants
A clinician/professional community member who is recruiting or referring participants for a clinical trial
Community health workers - people who are on the front lines will be answering questions from community members about clinical research
Ok. Now let’s begin with two big questions:
Why is it important to include underrepresented communities in the research?
How should I engage with community members about my specific project?
The first question inspired the creation of this toolkit, and drives the content contained here. The second question generates more questions, often with complex answers. You may face hesitation, skepticism, or anxiety when approaching community members. They may wonder:
Why should I (as a member of an underrepresented community) get involved?
What happens to the information I share with you?
Will I get any results specific to me when I finish this study?
Will I hear about the general results of the study?
What happens if I don’t want to participate in the study anymore?
Are you going to compensate me? How much?
Beyond those questions you may get from community members themselves, you may have many of your own questions.
How much should I compensate participants and participant communities?
How can I talk about consent?
What does it mean to engage with the community?
How do I find points of convergence between my research interests and community members' interests?
How do I make my research and my presence in the community relevant to people who live there?
What are the stigmas against participation that should be considered?
What ethical considerations should I consider when conducting research on substance use?
What are the structural barriers that may inhibit underrepresented populations from participating in clinical research? What can I do to address them?
We hope that this toolkit provides a valuable space to think about the ethics of engaging community partners while also offering practical strategies for effective engagement. In that way, using this toolkit can help you answer the big picture questions (the “Why?” in Question 1) in addition to the practical questions (the “How?” in Question 2).