After consistently seeing an underrepresentation of non-white patients in clinical research, Genentech decided to dig deeper as to why there is such enrollment inequity. According to an announcement from their website, the pharmaceutical manufacturer “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.”
Interviews with 2,207 patients were conducted to learn about their direct experiences with the healthcare system. Of the research participants, “1,001 [were] from the general population and 1,206 [were those] who qualified as ‘medically disenfranchised’ from four communities: Black, Latinx, LGBTQ+, and low socioeconomic status (Low SES).” Research findings unveiled a significant lack of trust, with patients often feeling that they had been treated unequally and unfairly – or worse yet, that the system was working against them.
Genentech revealed that approximately just one-quarter to one-third of medically disenfranchised patients agree that all patients are treated fairly and equally (27% Black, 27% Latinx, 34% LGBTQ+, 23% low SES). Meanwhile, nearly half (49%) of the general population agree with that statement. Furthermore, “52% of medically disenfranchised patients believe that the healthcare system is rigged against them.”
As a result of these experiences, medically disenfranchised populations often delay, interrupt, or discontinue seeking care – often “for fear that they were not understood.” Additionally, the lack of trust has also translated to as many as one-in-three medically disenfranchised patients opting to not participate in clinical trials, vaccinations, and testing for medical conditions.
Genentech plans to continue investigating this situation further and progress their program efforts to help combat this issue. The study’s announcement concluded with an inspirational message for the healthcare industry’s growth and improvement by stating:
“[T]o 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.”