How community outreach can help improve diversity in clinical research

Underrepresentation of minority populations is a very real problem in clinical research. Of the 46,391 study volunteers who contributed to the clinical trials that resulted in the approval of 48 novel drugs in 2019, only 9% of study volunteers were black/African American, only 9% were Asian, and just 18% were Hispanic. Also last year, ProPublica revealed a shocking underrepresentation of African Americans in clinical trials for cancer drugs, even when the type of cancer disproportionately affected this group. JAMA Oncology also published a study that showed that reporting on race in cancer clinical trials is infrequent, and that blacks and Hispanics were consistently underrepresented in landmark trials that led to new cancer drugs being approved by the FDA. And that’s just a few examples for you.

In many communities, there are deep scepticism, concerns and uncertainty around the intentions of clinical trials. As this may contribute to people’s reluctance to participate, it’s the job of the clinical research industry to address this.

We recently conducted a research project that investigated the lack of diversity in clinical research, and a number of respondents expressed a fear of harm and exploitation:

“We were told that black people should be cautious with the type of medication that we take because our bodies are not designed for it and we were injected with syphilis and all types of diseases to actually kill off black people. So that's why people in the black community are very cautious about medical treatment or any types of research. If somebody approached a member of my black community and he was saying, "Come here to do clinical research." They'd be reluctant just based on that history alone” - Black Caribbean respondent.

Clinical researchers need to change views like these by improving trust. And one way this could be achieved is by gaining validation from respected community institutions and figures. Community engagement strategies that focus on building long-term, authentic relationships with the communities they seek to reach, not only benefits researchers, but are something that people within these communities believe would be beneficial, too. Again, insights from our recent interviews agree:

“If you had somebody black people look up to, we tend to get encouragement in our heroes. You know, a black person who could promote medicine and research for black people” - Black Caribbean respondent.

“They’d probably rather relate to someone who they know are within their community that can share that information and put it across. It might be a language barrier where they can ask them questions, the pros and cons, the side effects, which will make them feel a lot more comfortable. I think that definitely is important. And you know what communities don't like, sometimes they don't like other people coming in, because that's the way they are” - Black African respondent.

“A Chinese representative - someone to say it's okay - can make a massive difference. But then I think every community needs someone like that. Some more information about it obviously. But maybe start with a representative” - Chinese respondent.

To execute a considered community engagement strategy, an involved and collaborative process is needed. Everyone, from any population, needs to be educated about the personal benefits and risks associated with participating in clinical research. Clinical researchers also need to make it clear how their studies can benefit an entire community. But most of all, concerns minority communities have regarding exploitation need to be addressed.

Buy-in from community advocates, representatives or medical staff from ethnic communities to help raise awareness and educate has the potential to break down barriers, as they’re already trusted within their communities. And the messages we lead with need to be relevant and focus on why people should care, highlighting why their community are more susceptible to some conditions and that they’re underrepresented.

For more insights and discussion around the underrepresentation of ethnic minorities - including what people from diverse backgrounds want to see and hear in terms of communications and engagement from clinical researchers - check out Demand Diversity.

Here, you can access a new research report that investigates attitudes towards clinical research among people from different ethnic groups in the UK.

This blog was first published here.