Our podcast and video series, mdtalk, shines a spotlight on the most important issues impacting clinical research, trials and patient experience.
In our first episode, we discussed why increasing diversity in clinical trials matters, and the impact a lack of diversity has on equity in health care. Our second episode focuses on the importance of actively raising awareness of clinical research in minority communities, and how we can do that effectively.
Executive Vice President for The Americas, LaQuinta Jernigan, was joined by Dr. Allison Matthews, CEO and founder of Community Expert Solutions, as well as Rashaad Galloway and Dezbee McDaniel, co-founders of CliniSpan Health.
Let’s set the stage with some statistics:
- In a review of 230 oncology clinical trials taking place between 2008–2018, only 145 included any information about the participant’s race. Of those that did, approximately 76% of the participants were white, 18% Black, 3% Asian, and 6% Hispanic.
- A 2014 study in Clinical Pharmacology & Therapeutics found variations in how people from different ethnic groups reacted to around 20% of new drugs approved between 2008 and 2013.
- Between 2008 and 2013 around one in five newly approved drugs demonstrated differences in treatment response across ethnic groups leading, in some cases, to doctors prescribing drugs differently according to ethnicity.
In this episode, Dr Allison Matthews importantly pointed out that people of colour react differently to drugs, but not because of inherent biological difference – it’s to do with lived experience. People of colour tend to have higher rates of stress and higher exposure to environmental toxins – this is a key reason why communities of colour must be engaged in clinical research.
Improving accessibility improves diversity
Dr Matthews highlighted one of the biggest contributors to a lack of diversity in clinical trials is accessibility. Limited access to resources, healthcare, transportation, employment, and safe housing is often what creates barriers for communities of colour to participate in research.
She told us: “Researchers” institutions are not set up in a way that makes it convenient and efficient for people of colour to participate in research. We need to really take a hard look at how we can do better to accommodate and make it more accessible for people in the community.”
Trust has to come first
As LaQuinta later observed, accessibility issues can be solved if we make the right commitments. For example, we can find ways to work with sites not used to participating in clinical research, we can provide the tools and resources they need, but we also need to build trust.
When it comes to medical research, there is a huge amount of distrust among minority communities. This is largely due to treatment in the past. Even if we worked to make clinical research accessible to everyone, it won’t matter if the trust isn’t there – people must be willing to participate.
Dezbee from CliniSpan told us: “Trust and accessibility are equally important, but trust has to come first. It’s the rapport you build with a potential patient that leaves them open to being educated about clinical trials, and open to exploring access. Once you have built that with them, you then become partners in trying to create accessibility.”
Partnership with communities is vital when it comes to building trust, although we have to be mindful that trust isn’t a one-way street. As Dr Matthews said: “Make sure that you have a continued presence in the community, don’t just come in and ask for what you need, and then leave. Be a resource for them and support their initiatives as oftentimes, they’re doing work in the community that goes unfunded and unsupported.”
The word on the street about clinical research
What’s the current perception of the lack of diversity amongst minority communities? Dezbee told us: “Physicians are understanding of the lack of diversity in trials. And the fact that so many of them are aware it’s an issue shows us just how this problem has persisted, and how it really needs a solution. On the patient side, while they don’t know statistics, they do know that they aren’t included and they are sceptical.”
Dezbee highlighted that due to the events of the past year, with COVID-19 putting clinical trials in the spotlight, there is a lot of misunderstanding out there about the medical research process. He told us: “A lot of people are equating medical research with the COVID vaccine right now. That’s the most recent thing that has given people a reason to have mistrust, and it’s what a lot of patient conversations are centred around.”
As LaQuinta pointed out, we saw a huge public health initiative around COVID-19 to explain how clinical trials work, and why you can trust the safety of the vaccines. This sort of campaign needs to be applied to clinical research overall – and then communicated to diverse communities through their leaders, addressing their concerns.
The role of community leaders
A huge amount of Community Expert Solutions’ work is engaging with communities. They host contests to gather ideas and solutions, as well as giving people an opportunity to express their concerns and share their perceptions about clinical research.
When it comes to engaging community leaders, Allison told us: “It’s not about pushing people to do one thing or the other: It’s providing them with the information so they can make the most informed decision. But once you’ve provided that information, you must make sure they have access.
“COVID-19 has been an interesting journey because we’ve done so much work to educate the public and build that trust with people – but then when they decided which vaccine they wanted, they had a nightmare getting access”
What do we need to do as an industry to address diversity?
Rashaad from CliniSpan said to address the lack of diversity amongst patients, we must also address the lack of diversity within the industry. He told us: “One of the first things that needs to happen is the inclusion of people of colour in the research process – not only as participants but as administrators and facilitators. We need more black doctors because black people trust black doctors – people of colour trust the people who look like them.”
Rashaad also highlighted that HCPs must be actively involved in clinical research in order to better communicate with their patients. He said: “As a student doctor, I make sure that I’m actually involved in the research process so that when I go talk to participants, I can tell them about what it was like, and share my personal experiences with it.”
The future of diversity in clinical research
In the clinical industry, the diversity and inclusion conversation is gaining momentum.
As LaQuinta shared in closing: “It feels to me that change is actually going to happen in the clinical space. The fact that we’re sitting here today, with two organisations that are tackling this problem, is a true testament to how far we’ve come.”
We hope that five years from now, in an mdtalk reunion episode, we can look back and say, “Wow, look at how much change has taken place.”
About our mdtalk guests
Community Experts Solutions works with research institutions and community partners to educate the wider community about clinical research, with a focus on reaching and including diverse populations. They identify and develop crowdsourced ideas that promote health equity. Current projects include Digital LinCS, an online platform that matches people to patient assistance programs and the state HIV Medication Assistance Program.
CliniSpan Health‘s mission is to improve access and diversity in clinical studies, and they were the first software platform for people of colour to access medical research. Their goal is to educate people, enrol them into participating in clinical research, and help them understand the importance of participation. Their platform allows people to easily find and enrol on clinical studies that are right for them, and they work with a number of non-profit partners to support their commitment to diversity and representation.