Tales from the Subcontinent: Trials, Triumphs, and Lessons in Tenacity from My Time Conducting Research in India

“Why India?”

Along with sunscreen and mosquito repellent, this query was my steadfast travel companion throughout my time on the subcontinent. The only thing more ubiquitous were the auto rickshaws that careened haphazardly through the streets (effectively hailing them eventually became one of my triumphs). Conducting research in any setting has its unique set of challenges, and adding cultural uncertainty to the mix is perhaps a thing some people would prefer to avoid. I decidedly fall outside that group.

My decision to travel to India to conduct nephrology research was influenced by many factors. I am fortunate to have had the opportunity to travel extensively in my 30-something years on earth, with a few excursions centering on medical work or volunteering in South India. My savoring of cultural unfamiliarity has not only helped fuel an insatiable curiosity, but has also rewarded me with an enhanced sense of community and an elevated respect for other perspectives. Because of my familial connection (my in-laws are from the subcontinent) and my desire to understand the plight of persons on dialysis in a country where out-of-pocket health care costs are irregularly subsidized, choosing India as the site of my research held an undeniable appeal.

The premise of my research project was built on the idea that many persons with end stage renal disease (ESRD) in India often experience an extraordinary financial burden, to the point where selling possessions and property and borrowing extensively are the only ways to fund their care. Data collected by government-sponsored surveys has revealed that approximately 70–80% of the population has no health insurance (1). This figure is in contrast to the 9% of persons in the United States without health care coverage as of 2016 (2).

Although there are government schemes in place that subsidize health expenses for persons below the poverty line (3, 4), this financial aid typically only applies to inpatient costs and does not mitigate the indirect monetary losses associated with transport to and from medical facilities and disruption in employment. Moreover, India’s healthcare expenditure as a percent of its gross domestic product (GDP) is below the global average (4.7% versus 9.9% [5]). Therefore, not only is comprehensive health coverage hard to come by, but the government seems to be lagging behind in its investment in health care as well.

How do these circumstances affect our kidney patients? To date, information on the economic plight of persons on chronic dialysis in India is scarce. Public hospital facilities provide dialysis (often twice weekly) at a discounted cost. Even then, the cost of dialysis sessions alone can reach 6000 rupees (6) ($94) per month. When compared to an average monthly wage of 7500 rupees (7) ($118), it is not difficult to appreciate the financial strain that dialysis places on a household, especially when indirect costs are considered. Furthermore, over 90% of nephrologists and dialysis facilities are in the private sector (8), where out-of-pocket costs can skyrocket.

With this state of affairs serving as a background, I leapt into the murky waters otherwise known as the Indian research apparatus. If I thought renal physiology could be inscrutable at times, it paled in comparison to the bureaucratic gymnastics I had to perform to get my study off the ground. In addition, the clinical obligations that accompany being a physician in the second most populous country in the world can understandably leave little room for anything else, research included. I found it difficult to effectively convince local nephrologists of the value of my study, especially when the onus of submitting study documents to their respective hospital institutional review boards fell squarely on their already heavy-laden shoulders. At times, physician reticence was also accompanied by skepticism regarding my motives (“Why India?!”). It was primarily due to the unceasing advocacy of a few talented and committed souls that I was able to eventually clear these hurdles.

My commitment (and ability to withstand regular 100+°F temperatures) having been tested, I am thrilled to say that my research is slowly but steadily progressing. Data collection has been completed at three sites and we are starting enrollment at two more.

I have met spectacular people along the way, all of whom have been willing to overlook the peculiarity of my non-native quest to help persons with ESRD in a country that is not my own. In addition to my research and nephrology colleagues, credit and gratitude is also due to the dialysis patients themselves. I was met with a receptiveness and warmth that is a testimony to the underlying sense of common humanity we all share—something that seems increasingly marginalized these days. I hope that by arming the nephrology community in India with concrete data on the financial hardships experienced by persons with ESRD, this research can provide an impetus for health policy change in the future.

Yes, there were challenges. Yes, there was weariness. However, there was also fun and a sense of accomplishment. Despite the exotic packaging, the ups and down were not so different from those that accompany the research process in any setting. Stepping outside one’s comfort zone can take many forms, but the personal growth and potential to effect positive change that can arise from that effort often outweigh the discomfort. As for the discomfort of dodging those careening rickshaws, I recommend calling their bluff; the drivers are more disciplined than they look.