Never Let A Good Crisis Go To Waste
January 18, 2023

That quote has often been attributed to Sir Winston Churchill as he and other world leaders worked to help gather interest and generate momentum to form the United Nations after WWII. The goal of these leaders was to learn from the crisis and make improvements to hopefully prevent another world war in the future.

It’s a quote I have thought of frequently over the last 12 months as our global community emerges from the crisis of the COVID pandemic and we all gradually return to our “new” normal. 

I say “new” normal because our goal in health care should be to learn from the crisis and make improvements to key challenges the pandemic highlighted. The challenge I’ve been thinking about is health equity. As an ER doctor in Chicago over the last two decades, I’ve seen the very real implications of having a health care ecosystem that is not equitable. More ER visits, less access to primary care and affordable medications and overall worse outcomes are often dependent on your zip code, your insurance and your skin color. I’ve seen that challenge. We certainly haven’t solved it yet. But, I’m pleased to see terrific leaders like Jay Bhatt be a driving force in #healthequity improvement.

What the pandemic really highlighted for me was how health equity (or lack of it) also impacts clinical research. How can we all be ok that clinical trials overall only include participation from 2%-15% of underrepresented racial and ethnic minority populations yet 40% (and growing) of the current US population is from diverse backgrounds? This discrepancy has very real implications to the understanding of effectiveness of therapies and the accuracy of the research. Trial participants (and the data generated) should closely resemble the patients those therapies are designed to help. If trials are not representative of the population, then the effectiveness of that therapy must be questioned. That isn’t rocket science. But it wasn’t talked about broadly before the pandemic. How often did you question the scientific data of the drug your doctor was prescribing? Did you ask if it was tested on people that looked like you? I’ve never been asked that question when prescribing a medication in 20+ years. Never.  

An early mentor of mine, Dr. Mark Chassin when he was CEO of The Joint Commission, once wrote changing human behavior isn’t rocket science. It’s much harder. There will be no simple, easy solution to improve equity in clinical research. It will take a multi-pronged, diligent and consistent effort.  

I applaud the FDA for recently highlighting the need for clinical research to focus on improving diversity of participation. That was an important first step. Now, the broader health ecosystem needs to focus on methods to engage more diverse populations to participate in clinical trials and we need to share the improvements. It’s a responsibility we all have to remove the barriers of participation in our communities. I bucket the barriers into three main categories: 1) knowledge of a trial, 2) access to a trial, and 3) trust.  

These barriers exist in all communities, but particularly in historically marginalized populations. Some examples of barriers to knowledge include language and health literacy challenges. Limited access to primary care is another obstacle that affects knowledge of a clinical trial that may be beneficial to a patient. Access barriers include systemic factors impacting location and transportation. I’ve been surprised to learn the average clinical trial participant lives more than a two-hour drive from any trial site making it almost impossible to find public transportation to take a patient to and from a location running a trial. Finally, and perhaps most challenging, is the barrier of trust. Engaging more diverse providers to lead and participate in clinical research would go a long way to begin to overcome the lack of trust that often and understandably exists today.   

These are just a few examples of the barriers to knowledge, access and trust in clinical research that impacts diversity of trial participants. How can we begin to remove these barriers? It won’t be easy. It won’t be a simple solution. It will take partnerships. It will take resiliency and consistent effort. But I believe we can make real improvements. We have to. 

Let’s not let this last crisis go to waste.