COUCH Health demands the clinical research industry improves participant diversityPosted May 20, 2020
As advocates of diverse and inclusive clinical trials, patient engagement agency COUCH Health is calling on the industry take action to make clinical research more inclusive and representative of all populations. Demand Diversity has launched with the aim to raise awareness of the lack of diversity in clinical research, and make change happen.
Lack of diversity and inclusion is one of the clinical research industry’s biggest issues failing to be effectively addressed. Despite regulatory bodies increasingly asking for evidence of drug safety and effectiveness in diverse populations, the elderly, the young, females, and ethnic and religious minorities are all still hugely underrepresented in global clinical studies.
CEO at COUCH Health, Ash Rishi, explains: “There are too many conditions and diseases that have treatments and medicines developed without investigating them with the populations they affect most, and that’s not okay.”
For example, 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.
“We can’t shy away from the fact that we all have a moral and scientific responsibility to improve diversity,” says Rishi. “If a treatment isn’t tested on all the different people that the condition could affect, there’s absolutely no way of understanding firstly if it works for everyone; secondly if it causes different side effects and outcomes for different people; and most importantly, if it could potentially be seriously harmful to certain populations.”
Introducing Demand Diversity
Demand Diversity is set to raise awareness as to why so many are still underrepresented in such an important area of medicine and treatment development worldwide, alongside what needs to be done to create real change. This includes underrepresented genders, age groups, cultures, and ethnicities.
By raising awareness of the issue, Demand Diversity hopes to make those in the industry stand up and take responsibility for their failings so far, while offering expert support and guidance on how to improve diversity and inclusivity in all areas of clinical research - from protocol design, patient engagement, patient recruitment through to patient retention.
For more details, visit demanddiversity.co. To help you understand the true extent of the lack of diversity and inclusion in clinical research, why it exists, the issues it causes, and more, the website has a collection of up-to-date and before unseen resources.
These include an in-depth research report following a series of lengthy interviews with representatives of a variety of cultures and religions; a comprehensive literature review; and a newly launched podcast series, inviting you to listen to what real people have to say about this very real issue.
“We all have a duty to create meaningful engagement with diverse groups that improves the data that’s generated from clinical research studies. The burden of proof for new medicines must reflect the real-world population. By having a clear understanding of barriers, beliefs and the limits on access to information, you can create a strategy that addresses and overcomes issues that prevent different populations from participating,” says Rishi.
If you want to know more about Demand Diversity, or would like to get involved, email: [email protected]
About COUCH Health
COUCH is a new breed of patient engagement agency that is born out of a very personal experience. In 2002, one of our founders lost their father to prostate cancer. Had his doctor been sufficiently educated on the signs to look for, he might still be here today. Had their father understood his own symptoms, he might still be here today. Had his father’s healthcare team been aware of potential life-saving clinical trials, he might still be here today. And so we are motivated by the profound understanding that, collectively, we need to do better.