Inequity in our healthcare system is an urgent issue. For too long, Black, Latinx and other marginalized patients have suffered vastly disparate health outcomes. At Genentech, we strive to put patients — and their experiences — at the center of everything we do.
Through our work pursuing groundbreaking science and developing medicines for people with life-threatening diseases, we consistently witness an underrepresentation of non-white patients in clinical research. We have understood inequities and disproportionate enrollment in clinical trials existed, but nowhere could we find if patients of color had been directly asked: “why?”
So, we undertook a landmark study to elevate the perspectives of these medically disenfranchised individuals and reveal how this long-standing inequity impacts their relationships with the healthcare system as a whole.
The Study: Giving Voice to the Medically Underserved
While many studies have probed into the complex causes and effects of health inequity, few are grounded in the lived experience of patients. To give voice to these important perspectives, we interviewed 2,207 patients — 1,001 from the general population and 1,206 who qualified as “medically disenfranchised” from four communities: Black, Latinx, LGBTQ+, and low socioeconomic status (Low SES).
To get to the heart of the patient experience, we asked tough questions about their interactions with the healthcare system. Their answers revealed that health equity has never been more crucial.
We must build bridges to medically disenfranchised patients to make them feel valued, respected, and understood. We must give them reasons to believe in the healthcare system.
Our core findings revealed a crisis of trust in our healthcare system among those who need it most. Medically disenfranchised patients believe, quite simply, that the healthcare system treats patients unequally and unfairly, and is even stacked against them. While our research spanned the entire patient experience, our initial findings include:
Patients do not believe that all are treated fairly and equally in healthcare.
While half (49%) of the U.S. general population feels all patients are treated fairly and equally, medically disenfranchised patients don’t agree. Based on our study, only 27% Black, 27% Latinx, 34% LGBTQ+, 23% low SES agree that all patients are treated fairly.
Medically disenfranchised patients believe the system is not just flawed — but that it is actively out to get them.
52% of medically disenfranchised patients believe that the healthcare system is rigged against them.
Medically disenfranchised patients are delaying and discontinuing routine care because they do not feel understood.
About half of medically disenfranchised patients interrupted their care – skipped follow-up appointments or stopped seeking care — for fear that they were not understood.
Medically disenfranchised patients are not participating in clinical trials, vaccinations, and testing due to lack of trust.
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.
Our study makes it clear: to address healthcare disparity, we must address issues of trust in the healthcare system. We must build bridges to medically disenfranchised patients to make them feel valued, respected, and understood. We must give them reasons to believe in the healthcare system.
We know we cannot do this alone. Only through a broad coalition of industry, government, NGO, and community stakeholders will we make the changes necessary to ensure the healthcare system works for everyone. This research is the latest step in our efforts toward that goal, and we hope it serves as a call-to-action for candid discussion, proactive collaboration, and meaningful action.
These initial findings will be followed by further program efforts as we dig deeper into the research. In the coming months, we will share additional findings from the study that we hope will continue to enable continued collaboration and progress toward our shared goal.
We live in an increasingly diverse world, and to deliver the best quality care, we must embrace and prioritize diversity — by putting the best interest of all patients first.