Ways to Engage Minorities and Women in Clinical Trials
Edwards: The longer we fail to include under-represented groups, whether they're minorities, women, in our clinical trials, the greater the gaps between the white middle class and these under-represented groups get. So I see it as a real health equity question, a moral and ethical question. But also a very, very complicated intellectual and sort of ethical challenge. It's not so simple.
Kleindorfer: So I'm passionate about recruitment into clinical trials for minorities and for women. I think it's crucial that we test these therapies in these subgroups, because we know that there are differential responses to therapies in minorities, in ethnic groups and in women.
Dromerick: Why is it important to recruit minorities? Well, they have a lot of stroke. They have disproportionate stroke. Stroke affects their communities more than other higher socio-economic status communities.
Romano: So as we learn more about neurological diseases, its causes and its treatments, we need to make sure that these treatments, this knowledge is applicable to everybody.
Woo: We have known for 20 or 30 years that African-Americans have double the incidence rate and some of the highest mortality rates for intrastromal haemorrhage and the same thing for Hispanics. And yet over that 20-year period, we really haven’t investigated why these disparities occur.
Kleindorfer: If you only study a disease in white men, then you don't understand what might be different about stroke in other subgroups.
Dromerick: The other thing I see is a lot of unnecessary strokes and disability from strokes, because people just don't understand how important it is to manage the risk factors, or they don't trust the person from whom the message is coming, or they heard from a neighbor that this medicine or that medicine is bad for you.
France: Sometimes research opens opportunities for people to receive treatment that they wouldn't otherwise and that opportunity should be open to anyone. But also there is, I believe, the responsibility that our scientific decision making is correct, and so we want to have a good representation of the population, the broader population.
Edwards: I don't think that these communities of color are actually not interested in doing research. I think there's a tendency to blame the community. "They don't understand. They don't get it. They don't value it." I don't think that's it all. I think people are desperate to find answers to questions about health care, and chronic diseases, and really devastating diseases that affect everyone.
Romano: As we are a very diverse country and if we want to export our knowledge, and these treatments, and we want to make sure that the whole world benefits from them, we need to prove that they are effective in all populations.