Guest post: Ensuring communities have a seat at the table: The importance of diversity in clinical trials

Guest Contributor
Guest Contributor May 25, 2018


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RCW photoJC photoConversations and healthy debate about issues facing our industry and the health care system are critical to addressing some of today’s challenges and opportunities. The Catalyst welcomes guest contributors, including patients, stakeholders, innovators and others, to share their perspectives and point of view.

In honor of Asian Pacific American Heritage Month, we are pleased to share a blog post from Jeffrey B. Caballero, MPH and Rosy Chang Weir, PhD from the Association of Asian Pacific Community Health Organizations.

Views represented here are those of the authors and may not reflect those of PhRMA.

With Asian Pacific American Heritage Month underway, we’re taking some time to celebrate the diversity within our community and to acknowledge the many contributions Asian Americans (AAs), Native Hawaiians and Pacific Islanders (NHPIs) have made to ensure a better tomorrow for all Americans.

This richness in culture and the goal of a brighter future for the next generation is among the reasons why the Association of Asian Pacific Community Health Organizations (AAPCHO) is dedicated to ensuring AAs, NHPIs, and other diverse populations are at the table when it comes to improving health care and medical research, including clinical trials.

Each year, nearly two million people participate in clinical trials to help doctors and researchers improve health care for all communities. These studies are central to the advances in medicine that help ensure treatment, prevention and behavior approaches are safer and more effective for the increasingly diverse makeup of our country.

Medicine and health care are safer and more effective for everyone when clinical trials include diverse populations. The patient and community voice is key to the success and effectiveness of these studies, especially when communities are actively engaged in the research process.

Yet, despite the scope and importance of clinical trials, there is very little awareness about the significance and life-saving, day-to-day impact these studies have on patients and their families among AAs, NHPIs, and other underserved communities of color. There is a lot of work to be done to increase awareness and encourage participation in clinical trials among these populations.

When patients and community members trust and are equal partners in clinical trials, it can improve the quality and completeness of data—leading to more scientifically sound research and medical advancements and innovations—and healthier patients, families and communities.

The goal of educating and meaningfully engaging patients in the research process is in line with AAPCHO's commitment to address the needs of patients, while advancing medical knowledge. As researchers and health care providers, we must acknowledge and put into practice, processes that recognize this important fact: that no partner is more essential to clinical trials and medical research, than the patients and the broader communities we serve.

Increased participation and representation of diverse populations in clinical trials depends upon building greater trust and respect between researchers and communities. We must continue to increase awareness and understanding of the benefits and opportunities to participate in clinical research.

Only when researchers work with communities as full partners, establish shared outcomes that are important both to the researcher and the community, can we meet patients where they are and bridge the gap in understanding the full benefits of clinical research.

We must continue to work together to ensure that patients and community members are aware and truly understand the difference they can make in participating in clinical trials, not only in their lives but also in the lives of their loved ones.

We must continue to make clear that through their participation in clinical trials and with patients as partners in the process, they are helping us to gain insights about the safety and effectiveness of treatments and procedures, and to take steps toward preventing, treating, and even curing disease and disability for future generations.

AAPCHO is dedicated to promoting advocacy, collaboration, and leadership that improves the health status and access of AA&NHPIs within the United States, its territories, and freely associated states, primarily through our member CHCs.

Topics: Clinical Trials