Please login to the form below

How community outreach can help improve diversity in clinical research

To execute a considered community engagement strategy, an involved and collaborative process is needed.

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.

21st October 2020

Share

Tags

Company Details

COUCH Health

+44 (0) 330 995 0656

Contact Website

Address:
Suite 2.10, Jactin House
24 Hood Street
Manchester
M4 6WX
United Kingdom

Latest content on this profile

New from the PhRMA: Diversity in clinical trials principles summarised
In November 2020, PhRMA announced the first-ever, industry-wide principles on clinical trial diversity. The principles were approved by the PhRMA Boards of Directors and will take effect in April 2021.
COUCH Health
New from the FDA: Diversity in clinical trials guidance summarised
In November 2020, the FDA released guidance to enable greater diversity in clinical trials through changes to eligibility criteria, enrolment practices, and trial designs.
COUCH Health
5 steps to effective clinical trial branding
When recruiting patients for your clinical trial, you want the materials and information around it to be seen as reputable and professional. To make it clear what the clinical trial is about and to ensure consent is informed. And be something that people are going to remember. And with some trials lasting years, building awareness and familiarity is key to improve engagement. That’s where your clinical trial branding comes in…
COUCH Health
October 2020: diversity and inclusion in clinical trials round-up
In our latest round-up of news surrounding diversity and inclusion in clinical trials, we take a closer look into the benefits that diversity can bring to society, learnings that we can take from the COVID-19 pandemic to shift our thinking around diversity and clinical trials, how we can address long-standing barriers to build trust in healthcare, and much more.
COUCH Health
Live panel discussion: Should diverse representation in UK clinical trials be mandatory?
This online event is being held by Innovative Trials, COUCH Health, and Egality Health.  Three organisations who are working to improve diversity in clinical trials.
COUCH Health
What are the biggest barriers in patient recruitment?
With the advances that have been made in clinical research, it’s almost hard to believe that the same challenges still exist within patient recruitment. Unfortunately, traditional clinical research models pose challenges at many levels and ultimately hinder the efficient running of clinical trials.
COUCH Health