mdTalk is our new thought leadership series, shining a spotlight on the most important issues surrounding clinical research, trials and patients. In our debut episode we discuss the importance of increasing diversity and achieving true representation in clinical trials, and what needs to happen to create lasting change.
LaQuinta Jernigan, Executive Vice President for the Americas at mdgroup, speaks to Karen Correa, PhD. Karen is the current VP, Head of Global Clinical Operations at Takeda, and has almost 30 years of experience in clinical research with a specialist focus on diversity and inclusion. Karen not only brings huge passion to her work but also uses her personal experience and expert knowledge to mentor young women and girls pursuing careers in STEM.
Karen’s career path was forged when she first learnt people of colour have a higher death rate from asthma, and witnessed the racial disparity in clinical research firsthand. From here it became personal, and she has since spent her career fighting for equal representation in medicine.
So why does diversity in clinical trials matter? LaQuinta kicked off the episode with some stats:
- In the US, 20% of people living with multiple myeloma are African Americans, yet they make up just 6% of patients in related clinical trials (Source: myeloma.org)
- 46,000 people took part in clinical trials in the US in 2019, only 18% were Hispanic, 9% were African American* & 9% were Asian (Source: fda.gov)
- South Asians represent 11.2% of the UK type 2 diabetes population, yet only 5.5% of those involved in clinical trials (Source: onlinelibrary.wiley.com)
- 1,518 COVID-19 studies were registered on ClinicalTrials.gov in the UK in June 2020, only 6 were collecting data on ethnicity (Source: thelancet.com)
Diversity ‘needs to be in the DNA’
Karen discussed how many different organisations have been working to improve diversity in clinical trials, yet their efforts have been siloed which has limited their impact.
With COVID, we have seen what can be achieved when the industry works together. Karen said: “It was when we started to work together that we were actually able to make an impact. If every little company did their own little thing, and nobody worked together, it wouldn’t happen. We are stronger together. And that’s how we’re going to have to impact diversity in clinical trials, we have to work together.”
Karen and LaQuinta also discussed how, for too long, diversity has been relegated to a task force, an initiative, or a focus group, which only goes so far. In order to affect change: “It needs to be in the DNA, it needs to be in everything that we do from the beginning to the end.”
‘Knowledge is power’
Knowledge is power, and lack of awareness is one of the biggest barriers to diverse participation in clinical trials. Karen and LaQuinta discussed why raising awareness is where we need to start. If people don’t know about the study opportunities open to them and the need for their communities to be represented in the context of global health, there is no imperative for them to get involved.
Karen told us: “You have to meet people where they’re at – where they get information from, this is where we start.” She highlighted the need to reach people where they “Pay, Play and Pray” – workplaces, community spaces and churches. Tackling the issue of diversity in clinical trials can’t be passive, we can’t wait for these communities to come to us. We are responsible for public communication, and we all have our active part to play.
LaQuinta reminded us of the huge impact that public health campaigns with investment behind them can have. For example, everyone knows that smoking is bad for you because of the success of these PSAs. She said: “Clinical research needs to have that awareness because it is so important in bringing down the disparities in health care, making healthcare more accessible, and treating so many different diseases. We need to bring that education in at an early age, and it needs to be consistent throughout and everywhere you look.”
Every community, culture, race and generation has different ways of communicating and a different experience of the world. Karen highlighted how crucial it is that we understand this and adapt our communication to be accessible to the people we want to reach.
Karen highlighted how we all have a person, group or place that we regard as a source of trusted, reliable information. The key is to tap into these. By enrolling community spokespeople such as employers, preachers, and group leaders in the mission to make clinical trials more representative, we can not only reach more people but also gain their trust.
As LaQuinta highlighted: “I know so many older black women who only found out that the COVID vaccine was available because their preacher said so at church on Sunday. That’s how they knew where to go, and they went and got in line because someone they trusted, that they went to for information and that they could count on told them.”
Karen further stressed the importance of trust, and how it needs to be earned by the healthcare industry. With so little research into minority healthcare and treatments, patients often don’t trust the medicines and treatments they’re given. She shared an experience of a close family friend who took her medication routine into her own hands because: “the doctor doesn’t know my body.”
Karen told us: “We can be courteous to our patients, but to truly gain their respect is by our actions. When we have true actions that are focused on the patients and not on ourselves, that’s when it’s going to change, that’s when we’re going to gain trust.”
The tools of the future
Karen shared how one of her supervisors once told her that right now: “We’re trying to solve Stars Wars problems with Flintstone tools.” But now, “We’re living in the Jetsons” as Karen says – a world where technology has advanced so much in so few decades, where young people constantly have a smartphone in their hand, and this provides so many opportunities for the clinical industry to reach new generations in innovative ways.
We have to be creative too. Promoting decentralised models which effectively use technology to enable participation means the industry has a real opportunity to engage a generation who are seeking these opportunities. If we get it right, these campaigns could “spread like wildfire”.
To increase knowledge of clinical trial opportunities, enable better access, and inspire people to take action, we need to work toward the same goal.
“When we all come together and look for common ground and solutions, that’s when we’re all going to make a difference,” says Karen. “We cannot do it in a silo, it will not work. And once we do that, we will see things change.”