Table 3.
Participants Responses | Pre-video Perceptions | Post-video Perceptions |
---|---|---|
Positive responses |
Community Participation.
“I think it’s a chance to look at problems and to try to collect information about the truth and be as objective as possible. And you try to find knowledge so that we can maximize everybody’s health and [help us] that way.” – Native Hawaiian Scientific Discovery. “New discoveries about how to improve our health or our lifestyle, education, anything. New findings.” - Latino Prevention. “Absolutely positive, research. New discoveries about how to improve our health or our lifestyle, education, anything. New findings.” - Latino |
Community participation.
“I was going to say that I like the whole approach and the dynamic of the video. But I think my humble opinion is that they should make more emphasis in showing the community how important it is for us to volunteer and help you, the scientists. We want solutions. We want our family members to be healthy, to live longer, even ourselves. So how is that going to happen? They can’t experiment everything on animals. We got to participate. We got to get involved.” – Latino Desire to help friends and family. “I have a friend, a close friend- she’s battling breast cancer. And within a year, both of her breasts got removed. So, I would like to get more information on that. I tell you, I would be willing to take medication or studies or whatever to get information.” - Latina Reassuring. (a) Family support, (b) IRB, (c) a better understanding of the process of health research. (a)“Yeah, and it didn’t exclude the family member if they wanted to be there, instead of saying oh, no, it just has to be this person.” – Latina. (b) “That IRB, that’s the first time I’ve ever heard it where it was utilized to make sure that the thing is a committee talk first before it’s utilized. I dig that because it’s like making sure that something that is trial doesn’t harm a person.” – Native Hawaiian. (c)“[I] like how thorough they are about telling you how the health research goes. They go into details, so you kind of know before you do it, the process.” - Filipino Personal health benefits. “Because I have high blood pressure and it’s sort of related to his heart disease. And it’s - they always tell you the same thing, watch your diet and exercise. If you’re in a [research] program, I think it would be better for you.” - African American |
Responses indicating needs improvement |
Health research not easily understood.
“I just think numbers whenever the news come on and they give me numbers, like data, stats and stuff like that. Yeah, when they dump – sometimes I don’t know what it means but it takes you awhile to figure out, oh, it’s pretty bad.” – African American Corporate ethics of health research. “I think of medical providers. Is it about health or is it about money?”– African American Risks of health research. (a) side-effects (b) role of the placebo. (a) “Because [the treatments are] not FDA approved, they’re investigational, that’s why. So you’re taking risks, you know…The person’s life could be changed forever.” - Latino. (b) “For me, both positive and negative. Sometimes it’s good medicine and sometimes it doesn’t work. Yeah, because you get a placebo sometimes.” - Latino |
Amount of time it takes to participate.
“Because see I have a part-time job and then I babysit and I don’t think that I have enough time to, you know, come and participate.” - Filipina Politics of Race /ethics of health research. (a)“…a lot of times the benefits [of a new medication] aren’t that great but its’ more so a financial issue for pharmaceutical companies… [who benefits-] Is it the patient or is it the pharmaceutical company”.– African American. (b)“I’m just concerned that why would you only test a certain group. If you’re going to have okay for diabetes, then it doesn’t matter what ethnicity you are…That’s what concerns me.” – Latino.(c)“[Why do you] only want to use these drugs on people of color?” - Latino Lingering concerns about risks. (a) the side effects, (b) and the role of the placebo. (a) “…with an experimental drug, am I going to grow another head? Am I going to grow a tail? I mean, and I’ve got little ones to think of, what I may not have now with all the side effects, are all those side effect actually going to go away, are they gonna stay?” - Latina. (b) “I would not [participate]…Because they make it clear that some people’s going to get the real thing and some people’s not and they’re not going to tell you which.” - African American |