I first encountered the lopsided nature of representation in the US healthcare system when I was newly pregnant with my son.
As a woman raised in a traditional and conservative Indian society, I was shocked that there were no female OB/GYN doctors available to attend to me. I ended up going with a midwife practice in the same hospital because as a first-time mother, I wanted female healthcare providers with whom I could be more at ease. With this group, I felt more listened to and respected to make decisions about my own body. However, it wasn’t until much later it occurred to me that even among the midwives, I didn’t find one that was not white. As a new mother, I was also shocked at the disparity in breastfeeding statistics and learned about the doughnut effect in urban/suburban cultures.
This led to my co-founding a breastfeeding education and advocacy network with a colleague/friend who was also then a new mother. Not that I should have been surprised. Having grown up in the global south, I knew firsthand the challenges of healthcare access and affordability and the related healthcare outcomes such as longevity. But naively, I expected a rich country to do better.
More recently, I co-founded a neuroscience healthcare startup that brings affordable state of art neuro assessment tools to global markets.
My experience as a community healthcare/ breastfeeding advocate and as a health-tech entrepreneur has taught me that an ecosystem approach is essential to address issues of diversity, equity, inclusion, and justice in healthcare. Because healthcare does not begin and end with the providers in a vacuum, engaging community partners and adopting an ecosystem approach to implementing DEI within healthcare system that considers social determinants of health is crucial for achieving health equity, health outcomes and lower healthcare costs.
For example, it is not news but still a wake-up call that Black and Hispanic Americans were disproportionately affected by the COVID-19 pandemic. How to implement DEI from a healthcare ecosystem perspective using a holistic patient approach that informs the design of our systems, processes, products, services, and organizations? Every ecosystem partner has a responsibility to reflect on the most important question of all: who do we serve?
80% of the world’s products, infrastructure, and services are designed for the top 20% of the world’s population. For example, even before the Covid-19 pandemic, 1 in 5 children were not protected against the most common diseases even with the availability of proven vaccines. This is because most vaccines require refrigeration to be effective but only 10% of rural hospitals in poorer countries have reliable power. Almost 50% of the vaccines in low resource settings get wasted. Similarly, many diagnostics, point of care, and surgical assistance bio medical devices also need reliable electricity. In many cases, the more expensive modalities are simply unaffordable and out of reach to majority of the world.
Social entrepreneurs aim to address these gaps by specifically developing products that are designed to function more robustly in under resourced conditions. Similarly, technology enabled patient advocacy groups are making great strides among under-served populations even within developed societies. Such entrepreneurs for whom the primary focus is under-served markets are disrupting the last mile delivery challenges. More well-resourced traditional healthcare companies will be well-served by paying attention, learning from, co-creating, and supporting these new and emerging players.
Simply by addressing the needs of under-served populations within one’s country and/or globally, you will be advancing inclusion in the healthcare sector. For this to be realized, however, we must make sure that product design teams must include people from different ethnic and demographic backgrounds and must consider variables such as gender, age, ethnicity, country of origin, sexual and gender orientation, and disability. Are those whom you serve also at the table? Are they comfortable, vocal, and welcome? Do you need to create new tables that are more welcoming?
To broaden participation, we must also reduce trust gaps. Even though racial gaps in Covid-19 vaccination rates are reducing, healthcare system has been untrustworthy to African Americans. The average wait time for African American patients needing kidney transplants is twice that of white patients. The mortality rate for African American infants is 2.5 times that of white infants. Further, if we increase diverse participation in healthcare delivery, we make it more accessible to under-served populations because African American, Hispanic, and Native American physicians are much more likely to work in under-served communities than their white counterparts. However, only 5% of medical graduates are African American and Hispanic and Native American physicians are even rarer.
To facilitate this, we need to redesign pipelines in educational settings and particularly medical schools. America’s doctors in training are predominantly white, English-speaking, Christian, and from upper socio-economic classes in suburban areas. They tend to set up practice in areas they are comfortable with and deal with patients like themselves. This leaves minorities, rural patients, and those who are challenged in English language struggle for care. We must ask ourselves, “how can I make my organization more inclusive?” When you think inclusive, it is best to think more broadly about demographic categories and appreciation of intersectionality is crucial.
Another setting that needs diversity is participation in clinical trials. Not only clinical trials provide access to experimental drugs and therapy and save lives of people who are otherwise at the end of the road, drug and device makers depend on this data to monitor endpoints for drug efficacy, refine dosage and make progress towards precision medicine. Precision medicine requires adequate representation of the population not just what could get through regulatory approval processes with ease. 86% of clinical trial participants are white. Until a couple of decades ago, most participants were predominantly male. When any one group is over-represented in a sample population, the results are not generalizable to other groups in the society. If 86% of the sample population is white, the discovery may not be truly relevant or applicable to nonwhite people.
For instance, my startup In-Med Prognostics Inc is the first company in the world to provide neuro-assessment reports and biomarkers that are not baselined on Caucasian data. This was a deliberate product development and market focus decision to provide meaningful and relevant clinical insights to whom reports generated based on Caucasian data is meaningless.
Strategies such as connecting with patient and community advocacy groups, using community based medical sites, widening participation criteria, supporting DEI oriented public policy, and making diversity in clinical trials an internal mandate. One of the developments of the pandemic era is that people are now used to using technology for healthcare. During the early stages of the pandemic almost 80% of the non-Covid doctors’ visits were tele-health in nature. Progressive clinical trial leaders are moving towards decentralized trials that allow patients in rural areas and patients with mobility issues to participate in clinical trials using their cellphones. It is time to focus on the whole person in context wellness rather than managing individual sickness. That is the way to improve health outcomes, enhance access and affordability, and reduce overall healthcare costs.