Research Pioneers: Meet Allison Kalloo

At Antidote, we aim to make it easy for researchers and patients to connect. And a big part of that work is creating opportunities for people to learn more about medical research and dispelling myths about medical research participation, both for patients and researchers.

For the past two weeks, we’ve renewed our focus on the topic of minority participation in clinical trials because experts across the board agree this is a key area for improvement. Recently on our blog, our partners have weighed-in on why it’s important for minority patients to consider joining a trial, what researchers can do to make it easier for minority participants to take part, and recent trends in the rates of minority participation in clinical trials.

We’ve learned a lot. Most of all, we’ve learned that this topic is something our community wants to learn more about. That’s where Allison Kalloo comes in.

Allison is the Founder of Clinical Ambassador and iParticipate, both of which aim to better educate both minority patients and the broader research community about the importance of diversity in research, and to create avenues to improve minority engagement in medical research. She has worked in research for many years, participated in more than a dozen clinical trials, and spends her days speaking with other people of color about why and how they can get involved in research. Most recently, Allison has agreed to partner with us to produce a series of content about minority engagement in medical research -- everything from the history of minority participation in clinical trials, to what the future holds.

The first episode in the series will air the second week of September, with additional content released every two weeks thereafter. Ready to meet Allison? Listen to the audio. Short on time? Read the highlights below.

What is the impact of not having minority participants be a part of research and of finding new potential treatment options?

The reasons it’s important for minorities to participate in clinical trials are numerous, but the justification for inclusion really boils down to the need for evidence-based medicine for all of us and equitable healthcare that stems from that. With no solid data backing the use of medicine on people of color, it’s unreasonable to expect that these interventions would work or work well in these populations. We are left to make assumptions about the interventions that are currently on the market, essentially telling physicians to “take a wild guess” about what will work in minorities, when what is prescribed was actually never adequately investigated in these populations. And, therefore, any recommendations about safety, about efficacy, about recommended doses simply don’t apply.

What it boils down to is that filling gaps in scientific information, in making clinical trials more diverse, is essential for medical progress across the country and around the world. And with the browning of America currently underway, health inequities will only grow, rather than shrink, under the same conditions of minority enrollment.

And we are starting to see some improvement. There was a report that was released with 2016 data by the FDA that showed the percentage of African American participants in research had increased from five to seven percent, which is pretty meaningful growth. Still not great, but it’s growth. But Hispanic participants remained at less than one percent of participants and account for a much larger proportion of the overall population.

Have you noticed any changes? If so, what else can we do to help move the needle and, if not, where do we go from here to start making some real change?

The obstacles to minority participation in clinical trials are rather numerous, but they tend to fall into two categories: those that originate in industry and those that originate on the patient side.

The ones that originate in industry include this pervasive myth about minorities being unwilling to participate, a lack of federal diversity standards that are actually enforced, implicit bias exerted by decision makers in industry, and the ways in which study marketing is planned, budgeted for, outsourced to, and even permitted by study officials. We need to address all of those, including the obstacles that directly impact whether patients actually enroll, like lingering historical distrust, logistical barriers, and cultural beliefs.

There is substantial evidence that minority participants, and African Americans in particular, are not affected by the past as much as it’s reported and repeated inside industry. In fact, recent studies support that access is a bigger obstacle than unwillingness; that minorities are often more willing than their white counterparts to participate. Imagine that. So this lie about minority unwillingness continues to be told again and again, and it flies in the face of reality and what needs to take place to address these disparities.