JThree years ago, when cancer turned my life upside down, I never imagined that I would have to fight to receive high quality care in one of the best hospitals in the country. But I did.
From being butchered during a biopsy, to being diagnosed with breast cancer via email, my healthcare experience was a nightmare from start to finish. This led me, a black person with extensive multidisciplinary expertise in research and innovation, to pivot my career to improve cancer care for underserved patients by having their voices heard in research and design.
I am currently the Principal Investigator of a $750,000 Health Equity Innovation Grant from Genentech, in collaboration with the Emory School of Medicine. As part of the grant, which started in the winter of 2021, I conducted extensive research with black people with cancer. My interviews revealed harrowing stories of abuse and biased care. A young black woman was denied a mammogram despite a growing mass, persistent pain and swollen lymph nodes. A black man was sent to a seedy, dodgy clinic for cancer treatment, even though he had good insurance and better options abounded. A black woman landed in the emergency room with a blood clot in her lung after a crescendo of dismissed symptoms.
Marginalized people know that these stories are not uncommon. Yet healthcare institutions either ignore it or turn a blind eye.
Clinical research shows that blacks bear a significantly higher burden of medical errors, missed symptoms, misdiagnoses, delayed treatment, and substandard care than whites. A black woman in America is three times more likely to experience a pregnancy-related death, is 41% more likely to die from breast cancer, and is more likely to die from a host of other illnesses, including Covid-19.
Racial disparities in health and health care are not new. They have been observed and quantified in all major diseases for decades. Funding for health equity has increased. However, the needle does not seem to have moved. I see this as a people problem.
Before being diagnosed with cancer, I spent decades in technology innovation, helping companies decode human problems, uncover unmet needs, and translate them into innovative products. I’ve witnessed time and time again how companies fail when they try to create products to solve human problems without understanding user perspectives.
Human-centered design processes have been developed to fill this gap. They begin by seeking to understand the feelings, needs and perspectives of the people they are designed for and end with solutions specifically designed to meet their needs. Human-centered design is widely used in many industries today, but its use is lagging behind in healthcare.
As I dug deeper and read the research and literature on health equity, I was amazed to find that patient perspectives were largely absent. The research was largely conducted by clinicians and often showed only a superficial understanding of patient experiences.
To uproot the inequalities that have plagued the United States for centuries, it is essential to understand the experiences of underserved and marginalized people. There is no shortcut or way around it. Correcting health disparities without drawing conclusions is like diagnosing a disease without knowing a patient’s history. This leads to false assumptions and misdiagnoses. Doctors know this; they are taught that 80% of the diagnosis is the patient’s story.
Certainly, access is a significant barrier to health equity. I commend 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 does not change what happens in hospitals and clinics once black and marginalized people are admitted and seen.
As a Stanford-trained scientist who’s worked in high tech for decades, I love data. But as a patient, I’ve come to recognize that scientific rationalization is not enough to improve outcomes. Unlocking progress means no longer viewing health disparities as statistics. Health inequalities are, first and foremost, a problem of human experience. They manifest viscerally in an excess of physical, emotional and psychological pain that exhausts people already weakened by serious illnesses.
The dangers of addressing health equity without understanding patient experiences are significant. They lead to slow progress and stagnation – every year without moving the needle leads to continued excess mortality. To see health disparities evaporate in this generation, they must no longer be treated as a problem of data. Only the marriage of data and human insight will unlock human progress. For this, we must take into account the experience of those who are excluded and poorly served by the health system.
Here are some considerations for incorporating patient experiences into health equity efforts:
- Recognize that workforce diversity does not replace the need to tap into the expertise of minority patients.
- Be aware 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 are lacking in health care.
- Hire consultants or develop in-house expertise in qualitative research, behavioral science, and human-centered design.
- Enhance quantitative research with empathetic, in-depth interviews to better understand the clinical experiences of underserved patients.
- Solicit input from marginalized patients to inform, shape and validate health equity solutions.
- Compensate marginalized patients for their contribution as valuable contributors.
Until health care recognizes that disenfranchised patients are part of the solution, not part of the problem, there will be no meaningful improvement in equity in health care. If the goal is inclusive care, the path to get 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 have been integrated into healthcare processes. We will need to use different thinking, and inclusive research and design, to root them out.
Sylvie Leotin is the Founder and CEO of Equify Health, a grant-funded healthcare innovation lab that develops solutions to power health equity.