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The recent events of the racial justice movement and the disproportionate impact of the COVID-19 pandemic, particularly within Black, Latinx, Asian and Indigenous communities, highlight the need for more equitable access to healthcare and clinical trials. Listening and learning from patients and physicians about critical barriers and ways to overcome them are therefore important steps to successfully achieving meaningful change.
Through this report and the series of reports and white papers to follow, we will share feedback from both our quantitative and qualitative research sources to support greater understanding and highlight areas for action.
Gain in-depth, expert insight from a range of seasoned professional with extensive knowledge about patient advocacy, life sciences, and how they impact diversity, equity, and inclusion.
Yasmeem Watson is a research, patient and consumer advocate, as well as a Stage III colon cancer survivor. She is a member of Fight Colorectal Cancer’s (FCRC) Research Advocacy Training and Support (RATS) Program and has dedicated herself to impactful research advocacy initiatives, including but not limited to serving as a consumer advocate on the Department of Defense’s Peer Review Cancer Research Program, the Alliance for Clinical Trials in Oncology, the Patient-Centered Outcomes Research Initiative (PCORI) and the American Association for Cancer Research Scientist↔Survivor Program.
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.
Malini Raj is a patient advocate, Non-Executive Director of the Australian Pituitary Foundation and member of the World Alliance of Pituitary Organizations. Malini is a strong patient advocate for Cushing’s disease, since she is a patient herself, diagnosed in 2013 after a 20-year journey to diagnosis.
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:
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.
Minnie Baylor-Henry, JD, is currently President of B-Henry & Associates, LLC, and executive partner of YourEncore, a leading provider of proven expertise to the life sciences and consumer goods industries. Previously, she was the worldwide Vice-President of regulatory affairs-medical devices for Johnson & Johnson. She also serves on Howard University’s Board of Trustees.
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.
Valerie Stone, MD, MPH, is Vice-Chair for diversity, equity, and inclusion of the Department of Medicine at Brigham and Women’s Hospital. Dr. Stone is an academic general internist as well as an infectious disease specialist and is a Professor of Medicine at Harvard Medical School.
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.
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Research participants have stated clearly that trust-building and community engagement are needed to engage and recruit participants from communities that have historically been underrepresented in clinical research. Long-term openness, transparency, support and the common goal of improving the health of everyone are required to enable meaningful change.
Inclusion of diverse participants and investigators is central to achieving excellence in research. Now more than ever, we need to focus on achieving excellence through inclusion.
Dr. Sherri-Ann Burnett-Bowie, Physician Focus Group Participant
To summarize, overcoming racial, ethnic and cultural disparities in the clinical-research industry will depend on efforts that engage on multiple fronts, including:
If clinical trials are to be effective measures in informing us about the promise of new treatments, we must also then be committed to doing what is required to ensure a demographically representative population in these clinical trials. Even though these nuanced issues are often challenging and complex, through collaboration and outreach, many barriers to clinical-trial diversity can be overcome.
Now, with a broadened perspective and greater understanding of the critical areas to address, we invite our industry colleagues to reflect together on diversity practices and identify opportunities to improve engagement with sites and patients from different racial and ethnic communities. By putting patients first, we have a clear opportunity to enhance research access for patients around the world.
Jamie Macdonald, Parexel CEO
This report incorporates learnings and insights from data derived from a series of surveys and patient/physician focus groups, which gathered insights concerning various topics on clinical trial diversity. We thank all participants for their time, openness and expertise. While many were anonymous, we are pleased to acknowledge those who were not, namely:
PAREXEL TEAM MEMBERS
The contents of this report are the opinions of third parties derived from surveys, focus group sessions, interviews and patient advisory group meetings and do not reflect the opinions or positions of Parexel or its affiliates.