Discussions on Diversity

There is mistrust among diverse, underserved communities pertaining to the medical sector. This report identifies some of the obstacles and factors in needed solutions. The patient’s voice is of most importance if the goal is to diversify clinical trials. There are many components of a patient’s journey, yet not feeling acknowledged may be the most heartbreaking. The feeling that your skin color or language is not a barrier to receiving adequate care is priceless.

Our society is not homogenous, hence a one size fits all approach is not appropriate. This is particularly true when it comes to such important and sensitive issues as health and the design of clinical trials and research approaches in order to optimize outcomes for all stakeholders.

Society as we know it is extremely ethnically diverse and multicultural. Each of these minority groups have specific needs, views, opinions and cultural nuances which shape the way they interact, react or engage in society and how they are impacted. These unique characteristics need to be considered, acknowledged and incorporated to ensure these groups are adequately represented in clinical research. As a patient from an ethnic minority group, I commend Parexel for their efforts in acknowledging the need for more diversity in clinical trials and research, and for using a multipronged approach to thoroughly understand the critical barriers that seem to be precluding adequate diversity in trials that is reflective of society.

It is refreshing to see this report has successfully drawn out some very key issues that may be contributing to the lack of diversity in clinical trials, such as awareness. Identification of the issues is the first step to making change.

From my perspective, some highlights that resonate include:

• The need for open communication and dialogue with ethnic minorities to address the lack of trust and improve understanding of the purpose and process of the trial
• The recognition of the need for strong collaboration, using trusted sources in the community to act as a bridge and leveraging relevant communication channels and formats
• The imperative to take the time to recognize and respect cultural nuances and cultural stigmas and stereotypes centered around health, the importance of family and community, and who needs to be involved in the decision-making process
• Acknowledgement of financial and physical limitations that may not be present in the mainstream population and being open to considering other locations or centers that may allow a greater diversity of participants
• Recognition that support, education and awareness need to be focused not only on potential patients / participants but also the physicians/clinicians, and an understanding by each party as to the important role they can potentially play in positive clinical trial representation and outcomes

As a patient, I would appreciate it if any or all of the above, is always kept front of mind, as it will allow greater empathy, cultural competency and understanding among those who are designing approaches or engagement strategies for clinical trials, and a greater likelihood for patients like me to be included, to contribute and to have a voice.

This diversity in clinical trials research is a needed and important first step to shine a light on the structural issues and ensure that there is greater awareness of the need for increased ethnic diversity in clinical trial participation. However, it also goes one step further in that it provides consistent insights that highlight some of the key barriers precluding clinical trial participation that can be addressed or further explored to allow participation to be truly reflective of the community in which we live.

As we face the many complexities of a public health crisis brought about by a global pandemic, Black and Brown people, along with other disaffected people globally, are watching as society confronts the reality of many years of healthcare inequalities. Society is now forced to grapple with the intersection of culture, race and class and the impact this has had on our fragile healthcare infrastructure. The pandemic, layered on top of the countless incidents of social unrest, has brought to the forefront, the reality of the many inequities in our healthcare systems.

When questions arise regarding the reluctance of Black and Brown people, for example, to trust the healthcare systems and allow a vaccine to be administered, historic mistreatment is uppermost in their mind. Have Black and Brown people been denied opportunities to participate in clinical research regarding treatments for diseases that primarily impact their communities? Why are Black and Brown people being asked to put aside their mistrust and believe that this year, at this time, everyone will receive equitable treatment and consideration? Why have there been minimal efforts to understand how to reach diverse communities in order to assure a better understanding of health concerns? How does the healthcare system restore trust in these disenfranchised communities after they’ve endured years of being damaged physically and emotionally?

This report provides some global insights into the issues facing Black and Brown communities that are now at a crossroads regarding how to respond to an unprecedented public health crisis. The report touches on the impact of structural, cultural and institutional biases and the resulting challenges for healthcare providers going forward. However, more research is needed if we are going to tackle the many injustices affecting all disadvantaged people globally.

Black, Indigenous and People of Color (BIPOC) are disproportionately affected by every major disease. This is true of diabetes mellitus, hypertension, cardiac disease, and cancer—the major chronic illnesses of our time. It is equally true of the life-threatening infectious diseases—tuberculosis and HIV, and now COVID-19. In contrast, however, BIPOC are underrepresented in clinical trials for the study of new treatments and preventive interventions for all these diseases. While this has been a concern for decades, the confluence of the COVID-19 pandemic’s inequitable impact on communities of color and our collective enhanced commitment to racial justice has made this a more urgent concern.

We know that the underrepresentation of BIPOC in clinical trials is at least in part a result of mistrust due to historical abuses of Black and Brown people in research and in clinical care. We also know that some of the underrepresentation is due to continued inequities and racial injustices in healthcare and beyond. Given this, if we hope to improve the representation of BIPOC in clinical trials, we must make active efforts to “move the needle.” Herein, we share important new findings from quantitative and qualitative research among diverse community members and diverse physicians about what it will take to enhance clinical trial heterogeneity. This report provides concrete ways that researchers and industry can become more trustworthy—by partnering with diverse communities in new and authentic ways and investing in building research capacity in diverse communities. We hope that you find this information of value to you in your work.