Friday, January 22, 2010

Including Minorities in Clinical Trial Research

On Wednesday, I focused on the data about NIH's inclusion of women in trials for 2007. When I asked the same question for minorities, the answer was harder to come by, primarily because NIH doesn't have information on its enrollment for minority-only studies. So, the numbers that I have from them are likely skewed because we can't separate the participation of minorities in diverse studies versus minority-only studies.

My answer to this was to look at the literature again. The vast consensus here, was that we really don't know how much minority participation there is. Most studies Don't report the distribution of races included in their studies; many don't even mention if there was a diverse population participating. So of course, if many aren't reporting this, then you'd expect that there's not much analysis of differences between minority and non-minority populations... and you'd be right.

We know that some minority populations are more prone to certain conditions, so if we want to see the populations that need these therapies most have access to them, minorities need to be involved in the studies. So for my second plea of the week - after asking researchers to start analyzing differences in effect of these treatments between men and women - is for researchers to add minority inclusion and analysis to clinical trial reports.

In order to get great data from these studies, clinical researchers and health care professionals need to consider the importance of diversity. Beyond that, they need to actually ask the questions, what is the difference between these groups, and report the findings... even if the findings are that there are no differences.

As participants, and patients that want to benefit from these drugs, we can also start demanding this. Patient-driven research is on the rise. Organizations like the Cystic Fibrosis Foundation have an excellent network of patients who are not only demanding the research, but are making themselves available to participate when trials arise. We all should be following their lead.

This is Part 12 of 13 in our From Ideas to Treatments series.
Part 1 - From Ideas to Treatments
Part 2 - Basic Research: It Starts with an Idea
Part 3 - You're an Animal!
Part 4 - Can I care about animals and do research too?
Part 5 - Regulations for Animal Research
Part 6 - Clinical Research Trials
Part 7 - Patient Safety in Clinical Trials: IRB Approval
Part 8 - Recruitment
Part 9 - Health Disparities in Clinical Research
Part 10 - A Brief History of Inclusion Policies
Part 11 - Breaking News: Women and Men are Different
Part 12 - Including Minorities in Clinical Trial Research
Part 13 - Bringing From Ideas to Treatments Home

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