Barriers to awareness |
Language
“Sometimes [staff] is required to be bi-lingual, which is another issue. I would say 90% of our participants are Spanish speakers and even if they don’t understand it they might not want to say anything…they’re afraid.” |
Health Literacy
“Why not just simplify it? Just have it compact where you don’t have to have 20 or 30 pages to figure out what [investigators] will be collecting and studying.” |
Cultural knowledge and beliefs
“They said things like we don’t know what they’re going to do with that [biomarker] information so I’d rather not participate.” |
Education about biomarkers
“There are a lot of so called ‘biomarkers’ that I have never heard of. [Investigators] need to educate us on this, but not in a condescending way. But in a good and productive way.” |
Facilitators of awareness |
Personal health
“It’s about me and my health and what I want to know about myself. That’s why I don’t mind participating in [biomarker] research.” |
Previous participations
“I participated in a diabetes study where I had to do several blood draws. It was a good experience because they also learned about taking care of me. I would participate again.” |
Knowledge (transparency)
“[Investigators] just take information and we never find out, and that’s kind of a bummer…”
“I think we have to be very, very clear about the guidelines, about it’s [biomarkers] long range impact. What are you using this biomarker information for?” |
Cultural sensitivity
“There are many diseases in this community and researches need to know what’s important to us. If they want us to participate, then they need to know what diseases are in community.” |