A Call for Equity in Research and Healthcare

In literature, Joseph Campbell pointed out in his book The Hero with A Thousand Faces that crossing the threshold is an essential step along the hero’s journey. This step is going from the familiar to the unknown, where the hero leaves behind home and ventures out into the world for the first time, whether it is Luke Skywalker leaving the planet or Dorothy taking her first steps onto the yellow brick road. This step is generally when the call to action is accepted in a story. Unfortunately, in life, our stories are rarely this neat, and in Dr. Amelia Knopf’s case, it was heading in the opposite direction, toward home, where she found her call.

Dr. Amelia Knopf, an assistant professor at the Indiana University School of Nursing, researches health ethics and equity. She was appointed by the National Academies of Sciences, Engineering, and Medicine to sit on a committee to improve the under-enrollment of women and racial and ethnic minorities in clinical trials. The Center for Disease Control, the US Food and Drug Administration, and even the US Department of State have cited Dr. Knopf’s work.

Dr. Knopf’s work has its roots in her early clinical experiences. After graduating from nursing school, she began an NIH fellowship working on oncology phase II trials at the NIH hospital in Bethesda, Maryland. At the NIH, Dr. Knopf saw that everything the patients needed was supplied, and those participating in the trials didn’t need insurance. Dr. Knopf explained that those participating in the trials came from similar backgrounds: white middle-class working professionals. At the time, Dr. Knopf lived in downtown Washington, DC and described the train ride home as “entering another world.”

Eventually, the contrast between Dr. Knopf’s work at the NIH and the reality of the inequalities in Washington, DC spurred her to change. She began work at a free medical clinic serving individuals with unstable housing. This experience contrasted deeply with her experience at the NIH. The clinic started as a soup kitchen serving meals out behind the church. When Dr. Knopf joined, it served 800 meals a day and contained three clinics: a medical clinic, a substance use disorder clinic, and an infectious disease clinic. The work there felt significant, but she saw many patients die of chronic illness, preventable diseases, and HIV. These were preventable deaths if the patients had the right resources. A desire to join these separate experiences, to provide the resources of the clinical trials to the free clinic’s underserved populations persuaded Dr. Knopf to go back to school and design ways to bring this to reality.

Dr. Knopf now spends her days improving access to new therapies for everyone. Her day-to-day work now would look very similar to any working professional. Dr. Knopf’s daily work includes supervising staff, coordinating meetings, managing budgets, and prioritizing her time. On top of these more managerial duties, Dr. Knopf’s research work has her writing papers, analyzing data, and summarizing her work for presentations and grant-giving institutions. This research and management are centered around equity and justice in healthcare. Dr. Knopf says we must always ask ourselves, “What is justice? What is equitable?” when we work in healthcare. Her research on stigma and bias is an essential aspect of this.

Dr. Knopf stated that moralizing gets in the way of healthcare when discussing her work. As researchers, clinicians, and scientists, we have long moralized problems like sexual and reproductive health, substance abuse disorder, and mental health. Dr. Knopf even pointed out that it wasn’t until the Obama administration that mental health services were covered under health insurance, even though mental health and other healthcare shouldn’t have that distinction. She sees that it is still the case that clinicians see substance abuse disorders as a moral or personal failing. This only prevents people from getting the necessary care and exasperates health inequalities.

Dr. Knopf does offer some solutions to these problems. She admits that none of us are free of these biases in healthcare. We may try to deny this, but we live in a structure that reinforces these biases. The best way to overcome them is by examining our actions and interrogating ourselves; we can then acknowledge our biases and attempt to move past them. To this end, the National Academies of Science, Engineering, and Medicine formed a committee to examine bias in research and determine who participates in research, who conducts and what can be done to raise enrollment of underrepresented populations in research.

As a member of this committee, Dr. Knopf and her colleagues’ findings contradicted some of the common explanations for the underrepresentation of some communities in research. It was long thought that trust and mistrust lay at the heart of the matter. However, Dr. Knopf found in her work with the committee that this was a red herring. Mistrust was still a problem but not insurmountable. Dr. Knopf suggests that, when trying to ensure representation in your research, flip the question around and ask yourself how to demonstrate trustworthiness rather than simply labeling the populations you are trying to reach as “mistrustful.”

For example, Dr. Knopf and her colleagues found that, if minoritized individuals were invited to participate in research, they accepted. However, researchers either do not ask or invest the time when asking for participation. It was found that those enrolling people in clinical trials would spend more time and effort on people who were White. The National Academies are now implementing these findings, which can be found here.

Dr. Knopf now puts these ideas into action when conducting her own research. For example, for an upcoming HIV clinical trial, she gathered a variety of people from a wide range of backgrounds to consult on how the trial could be conducted equitably. Notably, the people facilitating these meetings are from the communities being consulted. The questions asked were not about an ideal research situation, but what individuals could feel comfortable with. What could you justify? What is reasonable? This strategy encourages researchers to reach out to minoritized communities, rather than just saying a certain participant was “just to hard to reach.”

Dr. Knopf underscores that accountability is key. Especially when working with community partners, we must always ask ourselves who benefits from research. Researchers must remember that it is essential to benefit everyone, not just those participants easiest to reach.