Health Equity in Action: Reimagining Clinical Trials

What Are Clinical Trials?
Clinical trials are very important for developing new approaches to a disease. Clinical trials are research studies that help to find new ways to screen for, treat, or prevent a disease. Most clinical trials are approved and monitored by an Institutional Review Board (IRB). An IRB is an independent committee that ensures the study is ethical, risks are reasonable and outweighed by benefits, and all federal and state regulations for the safety and rights of participants are followed.

Who Participates in Clinical Trials?
Clinical trial participants are volunteers. Before participating, each volunteer is given details on the clinical trial study – the study’s goals, who is eligible to take part, how long the trial will last, potential risks and benefits, as well as tests, procedures, or medicines that will be used. Also, each volunteer must sign an informed consent document before getting involved in a clinical trial.

People of various races, ethnicities, age, sex, and sexual orientation experience disease in different ways. This is also true for people living in different social, economic, cultural, and geographic conditions. Many federal and state government agencies have policies for the inclusion of diverse groups of people in research grant applications. For example, the National Institutes of Health (NIH) has inclusion policies for research involving human subjects.

What Are Health Disparities?
Health disparities are health differences that adversely affect a group of people. Differences may involve how people are screened for a disease, how they get a disease, how severe they get a disease, how and whether they can get healthcare, and how many of them die from a disease. These differences may be based on race, ethnicity, sex, sexual orientation, disability, income, level of education, geographic location, and health insurance. There are many federal and state programs that seek to reduce health disparities.

In the past, clinical trials often relied heavily on white male participants, which led to an incomplete understanding of a disease and how to best treat it. Researchers now know that diversity and inclusion are important in clinical trials because it expands medical understanding and helps to promote health equity.

The ACR’s Efforts to Advance Health Equity
The American College of Rheumatology’s Collaborative Initiatives (COIN) “highlights rheumatology’s relevance to the health care community and public by using rheumatic diseases as case studies for treating complex disease, advancing health equity, eliminating health disparities, and improving the quality of patient lives.”

COIN manages The Lupus Initiative, “a multifaceted education program designed to reduce disparities and improve outcomes among people with lupus.” The Lupus Initiative website includes Materials to Increase Minority Involvement in Clinical Trials (MIMICT), which has several videos for patients on participating in a clinical trial. The videos can be viewed with English or Spanish captions.