Factoring in patients’ experiences is essential for moving the needle on health disparities

Three years ago, when cancer turned my life upside down, I never imagined I’d have to fight to receive high-quality care at one of the country’s best hospitals. But I did.

From being butchered during a biopsy and then later receiving a diagnosis of breast cancer by email, my health care experience was a nightmare from start to finish. It led me, a Black person with broad multidisciplinary expertise in research and innovation, to pivot my career to improve cancer care for underserved patients by bringing their voices into research and design.

I am currently the principal investigator of a $750,000 health equity innovation grant from Genentech, in collaboration with Emory School of Medicine. As part of the grant, which began in the winter of 2021, I have been conducting in-depth research with Black people with cancer. My interviews have revealed heartbreaking stories of poor treatment and biased care. A young Black woman was denied a mammogram despite a growing lump, persistent pain, and swollen lymph nodes. A Black man was sent to a shabby, questionable clinic for cancer treatment, even though he had good insurance and better options abounded. A Black woman landed in the emergency department with a blood clot in her lung after a crescendo of dismissed symptoms.

Marginalized people know that these stories are not uncommon. Yet health care institutions are either somehow unaware of this or turn a blind eye to it.

Clinical research shows that Black people bear a significantly higher burden of medical errors, dismissed symptoms, misdiagnoses, treatment delays, and substandard care than white people. A Black woman in America is three times more likely to experience pregnancy-related death, has a 41% higher chance of dying of breast cancer, and is more likely to die of a slew of other illnesses, including Covid-19.

Racial health disparities in health and health care are not new. They have been observed and quantified across all major diseases for decades. Funding for health equity has increased. Yet the needle doesn’t seem to have moved. I see this as a people problem.

Before being diagnosed with cancer, I spent several decades in technology innovation, helping companies decode human problems, uncover unmet needs, and translate them into innovative products. I repeatedly witnessed how companies failed when they tried to build products to solve human problems without understanding users’ perspectives.

Human-centered design processes were developed to address this gap. They start by seeking to understand the feelings, needs, and perspectives of the people being designed for, and end with purpose-built solutions to meet their needs. Human-centered design is widely used in many industries today, but its use is lagging in health care.

While digging deeper and reading through health equity research and publications, I was astonished to discover that patients’ perspectives were largely absent. The research was largely conducted by clinicians, and often exhibited only a superficial understanding of patients’ experiences.

To uproot the inequities that have plagued the U.S. for centuries, it is essential to understand the experiences of underserved and marginalized people. There is no shortcut or way around it. Fixing health disparities without insights from them is like diagnosing an illness without knowing a patient’s history. It leads to false assumptions and misdiagnoses. Doctors know this; they are taught that 80% of the diagnosis is the patient’s history.

To be sure, access is an important barrier to health equity. I applaud the researchers and health equity champions who have worked hard to improve access to health care, which benefits countless people. But access is only half of the equation. Improving access doesn’t change what happens inside hospitals and clinics once Black and marginalized people are admitted and seen.

As a Stanford-trained scientist who has worked in high-tech for decades, I love data. But as a patient, I have come to recognize that scientific rationalization is not enough to improve outcomes. Unlocking progress means no longer seeing health disparities as statistics. Health inequities are, first and foremost, a human experience problem. They manifest viscerally as excess physical, emotional, and psychological pain that depletes people already weakened by severe illnesses.

The perils of addressing health equity without understanding patients’ experiences are significant. They lead to slow progress and stagnation — every year without moving the needle results in continued excess deaths. To see health disparities evaporate in this generation, they must no longer be treated as a data problem. Only the marriage of data and human insight will unlock human progress. For this, we must factor in the lived experiences of those excluded and poorly served by the health care system.

Here are some considerations for incorporating patients’ experiences into health equity endeavors:

• Recognize that diversifying the workforce does not replace the need for harnessing the expertise of minoritized patients.
• Realize that providers’ understanding of the experience and unmet needs of Black patients may be partial and biased.
• Appreciate that marginalized people have essential knowledge to address health disparities that health care lacks.
• Hire consultants or build in-house expertise in qualitative research, behavioral science, and human-centered design.
• Augment quantitative research with empathetic, in-depth interviews to better understand the clinical experiences of underserved patients.
• Solicit the feedback of marginalized patients to inform, shape, and validate health equity solutions.
• Compensate marginalized patients for their input as valued contributors.

Until health care recognizes that disenfranchised patients are part of the solution, not the problem, significant improvement won’t be made in health care equity. If the goal is inclusive care, the road to getting there must also be inclusive. Equity in care cannot be achieved with a mindset and processes that exclude the very people who hold the keys to the solution.

According to a quote often attributed to Albert Einstein, “We cannot solve our problems with the same thinking we used when we created them.” Health care disparities are not accidents. They were designed into health care processes. We’ll need to use different thinking, along with inclusive research and design, to uproot them.

Sylvie Leotin is the founder and CEO of Equify Health, a grant-funded health care innovation lab developing solutions to propel health equity.