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Health Equity in Prostate Cancer Research & Advocacy

Clinical research has helped create effective treatments for prostate cancer. However, many communities have been left out in the process. Our goal at ZERO is to advocate for and ensure that all levels of prostate cancer care, including research, are carried out through a health equity lens.

Black man holding a baby with a curly hair

Mistrust & distrust in clinical research

It's really important to understand that medical research has helped create, develop, and improve treatments for many diseases, including cancer. However, many of these achievements have come at the cost of hurting and traumatizing Black people, people of color, people with disabilities, people with low incomes, and other underserved groups.

These injustices have made historically underserved communities fearful of medical institutions (also known as distrust). And most minority communities in general have an overall sense of mistrust, or unease toward health research and the institutions conducting that research.

Fixing the mistakes from the past and making research fair and just for everyone will take commitment. Research organizations and medical professionals must acknowledge the wrongdoings that took place. They also need to work to make sure that they don't happen again. But most of all, they need to partner with the communities in which they are carrying out research. They should treat any and all participants as partners in research, not just subjects to study.

Patient-centered & community-engaged research

In clinical research, patients' experiences from beginning to end are influenced by the ways in which the research is done. Traditionally, research has focused on patients as targets to be studied, but has not included them as partners in the studies. Researchers are working to be more thoughtful and inclusive in their current and future studies.

Patient-centered outcomes research is one such approach. This type of research prioritizes informed consent, choice, and shared decision-making. Patient-centered outcomes research builds itself around the things that are most important to the patient. Researchers look at how the studies affect the patients' health and well-being. They listen to the experiences of the patients and adjust the studies to match.

Community-engaged research builds upon patient-centered outcomes research. The patients stay as the center of the study, but in partnership with health service systems, community-based organizations, faith communities, and other groups. This helps everyone involved work together and use their knowledge to make the studies better. Best of all, this collaboration builds trust between researchers and the communities, and helps improve community health.

Lee Moultrie

ZERO's Health Equity Learning Communities

As a part of our efforts to advocate for patient-centered and community-engaged research, ZERO is developing local learning communities for men experiencing disparities in prostate cancer outcomes.

Our first learning community is funded by the Robert Wood Johnson Foundation Interdisciplinary Research Leaders program and will be in St. Louis, Missouri. This community will include prostate cancer survivors, healthcare providers, and healthcare administrators. These groups will work together to create solutions that will help families who are having a hard time dealing with prostate cancer. To learn more, please visit the Interdisciplinary Research Leaders project description page.

We are also excited to work in partnership with the Medical University of South Carolina on a new project. This research study focuses on understanding the challenges that Black/African American men have when they go through the cancer care process, from getting screened for cancer to getting treated and even after they've beaten cancer. Through the South Carolina Prostate Cancer Screening Program for African American Men (SC AMEN Program), our goal is to figure out what health equity looks like in cancer care for African American men, and what tools are needed to achieve it. 

Prostate cancer research resources

Participating in prostate cancer research and clinical trials can be nerve-wracking, especially for those who are from communities that have historically been hurt by research efforts. But researchers are using new ways to make sure that every patient in a study is kept safe and is also given the power to be part of discussions and decisions.

We are here to help! ZERO has a number of resources that give more information about prostate cancer research. To learn more, please visit our Clinical Trials education pages. To find a research study or clinical trial that may be right for you, please visit the following sites: