Patients want change; providers agree—we need to disrupt the status quo.
Inequity in the healthcare system has widened amid the COVID-19 pandemic, and Genentech believes sustainable solutions begin with a deeper understanding of the experiences of medically disenfranchised patients. In 2020, we launched our first survey of underserved patients to uncover their perceptions of and experiences with the healthcare system. This year, we probed more deeply on the patient experience and also included healthcare providers (HCPs) in our study.
The 2021 Study
To investigate year-over-year change in patients’ perceptions and experiences, we designed our 2021 study using an online questionnaire answered by 2,200 U.S. patients — 1,000 from the general population and 1,200 who identified as medically disenfranchised and as belonging to one of four groups: Black (300), Latinx (300), LGBTQ+ (300) and Low Socioeconomic Status (SES) (300). We also questioned 403 HCPs who identified as physicians, nurses, pharmacists and physician assistants.
Inequities within the U.S. healthcare system persist and are deepening for medically disenfranchised patients
More than half (54%) of medically disenfranchised patients continue to feel the system is rigged against them and overwhelmingly agree that healthcare inequities have worsened over the course of the pandemic.
Healthcare providers agree that the system is not serving patients as it should
Only half (50%) of HCPs surveyed believe that the healthcare system acts in the best interest of society. Plus, nearly 9 in 10 report witnessing their own patients stopping care.
Healthcare providers and patients agree: a positive, trusting relationship with a patient’s healthcare provider is of the utmost importance in building trust in the system overall
Being taken seriously by your HCP and trusting them scored as the top two most important aspects for medically disenfranchised patients to building trust in the healthcare system.
There are gaps between intention and perception in the patient-provider relationship
While the vast majority of HCPs say they strive to treat their patients as equals (87%) and be sensitive to their emotions and feelings (91%), many medically disenfranchised patients do not perceive this within their own experiences. Approximately half of medically disenfranchised patients reported having stopped seeking care because they either did not think the HCP understood them or they did not believe their HCP would genuinely help them. Additionally, nearly half of medically disenfranchised patients (47%) don’t ask questions because they are fearful of looking unintelligent in front of their HCPs, further impacting open dialogue and communication.
Healthcare providers believe misinformation is exacerbating distrust in the system and poses a greater threat to medically disenfranchised patients
82% of HCPs say health misinformation is a serious threat to the system, 75% agree that it is a greater threat to medically disenfranchised patients in particular and 72% agree that patients have a more negative view of the system as a whole because of misinformation.
These findings indicate that the patient-provider relationship is a key point of intervention in advancing health equity. Ensuring HCPs have the support, incentives and time to build meaningful, empathetic and culturally responsive relationships requires change at multiple levels — and likely cannot be solved with training alone, or without the input of patients themselves.
Through the recently launched Advancing Inclusive ResearchⓇ Site Alliance, Genentech is collaborating with several clinical research centers around the U.S. that have expertise and demonstrated success in bringing urban and rural populations and patients of color (specifically Black and/or Hispanic/Latinx) into clinical research. Together we are exploring best practices in engaging and building trust with medically disenfranchised populations through co-creation, collaboration and community building. We aim to share learnings from this work more broadly across the healthcare ecosystem.
However, we are also keenly aware that we must not overestimate the opportunity to advance health equity through the patient-provider relationship without other meaningful efforts to address social determinants of health, healthcare access, cost, accountability, quality and efficiency.
Genentech shares accountability in moving the healthcare system towards equity in partnership with HCPs, intra-industry and cross-industry peers, nonprofits, community-based organizations, government and most importantly, patients themselves.
In 2020, we invested more than $16 million towards advancing a more fair and just healthcare system and diversifying the healthcare and scientific workforce. Innovative grants include efforts to leverage virtual reality to deepen provider empathy, develop more compelling messaging to engage women of color in clinical research and incorporate community-based participatory research in clinical trial outreach strategies. Efforts like these have the potential to strengthen the field in practical and sustainable ways, and we need to continue to work together to spread what works and invest in systemic change.
Putting the voice of medically disenfranchised patients at the center of these efforts unlocks rich insights and possibilities to disrupt the status quo. We believe that by really listening to and understanding what historically marginalized patients and their healthcare providers are experiencing, we can move intentionally toward health equity for all.