This year has shed light on the hard realities for patients from communities of color. By now, it is no secret that broad, systemic societal inequities have led to significant health disparities including the disproportionate impact of COVID-19 on Black, Hispanic/Latinx and Native American communities. To compound this dynamic, there is a significant lack of trust in the healthcare system.
More than 85% of patients that participate in clinical trials are White, but in order to ensure that medicines and treatments work effectively for everyone, we need to increase diverse representation in clinical trials. At Genentech, our focus is on tackling the world’s most serious diseases like cancer, multiple sclerosis and Alzheimer’s disease. Our teams wanted to better understand why patients of color are not participating in clinical trials, so we went directly to the source: the patients.
As someone who has actively worked in the biotech industry for more than 20 years, I understand how medicines are rigorously tested for safety and effectiveness during clinical research. I also personally understand the lack of trust in the healthcare system. While I may be a biotech executive, I am first and foremost a Black woman, a Black patient, and a Black mother. In fact, my family members and I will often go out of our way to be seen by a physician of color. I know that by doing so we will be cared for and understood.
That’s why, we at Genentech conducted a study to better understand and elevate the patient voice by asking them how they experience health inequity in their daily lives, and how that inequity impacts their relationship with the healthcare system. What we found is that when patients don’t feel safe, respected or heard, they are less likely to seek medical treatment. Our study also uncovered that there isn’t just an issue of access, there is a crisis of trust in healthcare in medically disenfranchised communities.
The study probed into the healthcare engagement with and experiences of 1,200 medically disenfranchised patients, as well as 1,000 patients that represent the U.S. general population for comparison. Medically disenfranchised patients belong to historically marginalized communities that lack access to quality healthcare, and report having experienced unfair treatment based on factors including race, ethnicity, gender, sexual orientation and socioeconomic status. Of the 1,200 disenfranchised patients we surveyed, 300 are Black, 300 are Latinx, 300 are LGBTQ+ and 300 are of low socioeconomic status.
The responses mirror what millions of patients live every day; our study found that 52% of medically disenfranchised patients believe that the healthcare system is rigged against them, and understandably so. In fact, less than half of medically disenfranchised patients have confidence that the healthcare sought will be considerate and empathetic, and fit their specific needs. The disproportionate impact of COVID-19 on communities of color will only become further exacerbated due to this lack of trust as vaccines are distributed. Our study also found that around one-in-three medically disenfranchised patients don’t participate in clinical trials, don’t get vaccinated and don’t get tested for medical conditions due to lack of trust.
Broad societal inequities, including those in the healthcare system, are systemic and we cannot solve these issues alone. Genentech is working to build trust by leading the industry forward in delivering scientific innovations that drive better outcomes for patients by advancing and boldly championing diversity, equity and inclusion. We are acting with urgency to make the healthcare system work for patients who need it most. We are committed to advancing inclusive research, partnering with communities to make quality healthcare more accessible. We’re achieving this by investing in a diverse science, technology, engineering and mathematics talent pipeline to ensure the next generation of doctors, scientists and researchers are diverse and representative of what the world looks like. But there is still so much more work to be done.
Our study uncovered great challenges, but it has also revealed great opportunity. It’s time to build bridges to medically disenfranchised patients and offer new reasons to believe in the healthcare system. The fight for health equity is more than a moment, it is the standard of care.
In 2021, we need to prioritize success in reaching underserved populations in clinical research. We all must step up and speak up to help build a more equitable system. Learn more about what we at Genentech are doing to advance health equity here.