The Saga Continues: Participation in Research

Yesterday I blogged about a study that explored children’s non-participation in research. Today I came across a study that examined minority vs. non-minority populations’ barriers to clinical trial participation. To understand why a significantly lower proportion of African Americans (vs. Caucasians) participate in clinical trials, the researchers examined two categories of barriers: (1) structural (e.g., doctors not discussing trial options) and (2) cognitive (e.g., lack of factual knowledge, fear). The authors found that compared to those more likely to participate in trials, African American participants perceived greater risk to participating and had lower knowledge about what participation entailed.

educationSuch findings highlight the need to prioritize taking the time to educate patients on their potential participation in research, what the study entails, and the risks and benefits that can be expected. I know from personal experience that it is so exciting to recruit participants (and finally gather data!) but the process of informing potential participants is not to be undermined nor rushed. Although the default option of ‘opt-in’ would likely increase participation among such minority groups, efforts to educate participants about studies would have to be strengthened. As Hein et al. (2015) discussed yesterday, perhaps there is need for novel strategies to educate patients on research participation (e.g., illustrated information and consent)… after all, it’s well-known that we all have the tendency to learn in different and unique ways!

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