In medical research, we can't just talk about "inclusivity" and call it a day. It's a must-have, not a nice-to-have. As a Black woman who's been both a patient and involved in research, I can tell you we've got a lot of work to do to make sure everyone is represented, especially people of color, neurodiverse and people with disabilities. The COVID-19 pandemic showed us that a one-size-fits-all approach doesn't work. Issues like health conditions we already had, money struggles, and built-in biases have hit us harder. This isn't just about making sure we're counted in research; it's about making the research better and more useful. If we're not in it, the research is missing a big piece of the puzzle.
Now, let's talk about equity. Some people say focusing on equity divides us or is unfair to others. But let's be clear: equity is about making sure everyone has a fair chance. It's not taking from one to give to another. For those who say, "Why not treat everyone the same?" Well, doing that often keeps things unequal. If you're still confused about what equity really means, I'm not spending more time on that here.
At this point we all need to move forward and stop wasting time engaging with the deliberately obtuse on basic concepts surrounding equity and diversity, whose end goal is to slow down progress towards true equality.
But listen, even those of us who think we “get it”, who want to make things better, need to be careful. We can't let our discussions highlighting the magnitude of work ahead, accidentally, make people feel like there's no point in trying. We need a balanced approach to create a roadmap to the path forward where everyone can be part of research, especially medical research in a fair way.
The Historical Context
We can't discuss research, especially medical research without discussing healthcare. We also can't discuss the current state of healthcare without acknowledging its historical baggage. This system didn't just wake up biased; it's been that way for a long time. No sugarcoating here. The Tuskegee Study was a horrific chapter in medical racism. Black men were treated like lab rats, all under the guise of "science." The trust issues we see today in Black communities didn't just happen; they were built over time by actions like these. Henrietta Lacks, a Black woman, had her cells taken without her knowing. Those cells have been a goldmine for medical research. But what did she or her family get? Not a single dollar! This isn't just a tale of scientific progress; it's one of exploitation.
Segregation and Restricted Access to Care
We can't overlook this. Segregation wasn't just about separate schools and water fountains. It extended into healthcare, with BIPOC communities often receiving subpar treatment or being flat-out denied access to care. This isn't ancient history; the effects are still felt today. Hospitals in BIPOC neighborhoods are often underfunded and understaffed, and clearly an under scrutinized breeding ground for power drunk racists.
This issue isn't just an inconvenience; it's a matter of life and death.
My Ongoing Struggle
Let me make this personal for a moment. I've faced ongoing restricted access to care myself, especially during my journey with Long COVID. Despite my advocacy work and many privileges. I've almost died unnecessarily 3 times, in the past year alone from biased healthcare. I've also been threatened with arrest for seeking care for Long COVID symptoms this year, yet again. Due to the infection associated chronic illnesses, I now struggle with, post COVID, I run a high risk on any given day of an adverse reaction. Even more so when participating in research that involves anything even touching my body, much less ingesting a drug for a research study. This issue of hospital generated early death is beyond the maternal mortality disparity, that is now regularly discussed in mainstream research and healthcare conversation. It's a personal battle many of us are fighting every day over the smallest and simplest of actions. These aren't one-off events either. They're part of a bigger picture that's led to deep mistrust in BIPOC communities. And who can blame us? Why trust a system that's shown time and again it doesn't care about you?
Present day, I'm quite regularly placed in a “separate” part of the emergency room where I can be watched more closely by security even during times when I struggle with mobility.
I don't think you heard me. PRESENT DAY! Segregation is very much alive. BIPOC bodies are often a living crime scene by the time we reach adulthood, for a variety of reasons. This restricted access creates apprehension for people of color when it comes to the risks of trying experimental or even “ safe” repurposing of drugs in clinical trials. Add to that the threat of arrest we face whether it's police brutality while in transit to the hospital or even within the hospital itself and you begin to see the layers of complexity that make BIPOC communities hesitant to engage in medical research.
The Dangers of the Journey Itself
Transportation is often an overlooked barrier in research participation, especially for BIPOC communities. While the financial burden of getting to a research facility is a significant hurdle, there's another layer of complexity: the risk of traffic stops that can escalate into violent encounters or expensive tickets due to over-policing in certain neighborhoods. This is not just a financial issue; it's a life-or-death concern for many. Moreover, there's a palpable sense of trepidation that comes with entering an unknown facility for a study.
In a time where we've seen people of color arrested or even killed for so-called 'trespassing' on their own property, the fear of walking into an unknown building, at the behest of an unfamiliar organization, in an often too familiar neighborhood is valid.
Some of my most esteemed BIPOC friends in the scientific field have told me about being mistaken for being the janitor, even years into their employment at a facility. Most researchers may never consider these emotional and psychological barriers, but they are very much a part of the equation when BIPOC individuals weigh the pros and cons of participating in a study.
Breaking the Cycle & The Researcher's Responsibility
I can't stress enough how problematic it is to place the sole responsibility of educating the scientific community on equity solely on the shoulders of BIPOC researchers. While our perspectives are crucial, this expectation is both unfair and emotionally draining. When White colleagues, fueled by curiosity and passion, ask us to share our experiences with racism, they often don't realize the emotional toll it takes to relive those moments. It's not just a matter of sharing data points; it's about revisiting personal traumas. This approach also misses the mark on addressing the root of the issue: the systemic and policy changes that need to happen. Achieving genuine equity in research isn't just a matter of adding more BIPOC voices to the mix; it's about fundamentally changing the structures that perpetuate inequality. You can ask, just expect to pay us for our insights, as we likely will need to pay for therapy or already go to therapy for those traumas. The cuts of racism hurt every single time. The same way sexism, and any other ism you'd relate to, hurts regardless of how often you experience it.
This isn't just about ethics; it's also about practicality. The earlier you integrate strategies to mitigate these risks into your study design, the less time and money you'll spend on recruitment down the line.
The Uncomfortable Truth: of Unlearning Biases
Now, let's get real for a moment. This is going to hurt, but I trust if you are reading this far in that you can handle the real truth….
Even the most progressive among us hold biases against people of color. I've seen it firsthand. Researchers get frustrated about BIPOC apprehension when it comes to study engagement and recruitment, and they place the blame on the communities. That's not just wrong; it's counterproductive. That attitude is palpable; we can feel it in our interactions and even see it reflected in the study design. There's no room for that. If you are in this field and touting the need for BIPOC participation, your job is to do better, to be better.
I discovered my own biases against people with disabilities, biases that I didn't even realize I had until I became disabled myself. Holding biases is normal; it's a part of being human. But that doesn't mean we shouldn't put in the effort to unlearn them.
The work to unlearn is not just important; it's impactful. As a researcher, you hold a responsibility to humanity and society to work towards an authentic truth in publishing your work. It's quite the burden for you to carry, if you sit with the fact that many research publications over the years have been used as a tool to elevate White supremacy. Wittingly or unwittingly. I have noticed this level of callousness in terms of what is at stake when it comes to the potential for research concepts to harm communities of color if published through a “ colorblind” lens. That is unacceptable. The pen is quite often mightier than the sword!
The Imperative of Emotional Intelligence
Leaning in on continuing the practice of “colorblind objectivity” in pursuit of science, is not only sophomoric and archaic but it's just plain academically lazy. We have evolved the understanding of how social sciences have fueled inaccurate data in terms of gender and race before in research norms, there's space to move even further. At the very least you can't claim to be “invested” in recruitment and engagement of bipoc communities and simultaneously refuse to do the free work of self auditing. So, I'm asking you, to have the courage and be vulnerable enough to accept that in your pursuit of an academic research career, you may have missed out on much needed time to develop a high enough emotional intelligence to sift through the often nuanced onslaught of anti BIPOC biases.
A high level of emotional intelligence is needed to curate research that is not just patient centered, but inclusive without resentment.
But so much academic knowledge is needed that in order to graduate on time, almost all focus goes into acquiring book knowledge. Thats unfortunate. But fixable. Give yourself the time, grace and space to unlearn any negative attitudes you may hold about people of color, or any other marginalized group for that matter if you want to produce REAL objective research. Objectivity doesn't mean devoid of scrutinizing how society would receive the findings through your fallible lens. This isn't just going to improve your research; it will improve your life, via your relationships, outside of it. In the authentic pursuit of equitable and ethical research of BIPOC communities, mind, you're not just becoming a better researcher; you're becoming a better human being.
5 Ways to Create More Equitable Research
1. Conduct a Risk Assessment
Before launching any study, researchers should conduct a comprehensive risk assessment that takes into account the unique challenges faced by BIPOC and other underrepresented communities. Including neurodiverse and people with disabilities. This includes not just medical risks, but also the risks associated with transportation, law enforcement encounters, and entering unfamiliar facilities. By understanding these risks upfront, researchers can develop strategies to mitigate them, making it easier and safer for a more diverse group of individuals to participate.
2. Implement Emotional Intelligence Training for Research Teams
Researchers should undergo emotional intelligence training to better understand the emotional and psychological toll that participation may take on diverse communities. This training should also cover the emotional burden that BIPOC and other underrepresented community researchers face when they are expected to educate their colleagues. Emotional intelligence is key to creating a research environment that is not just inclusive but also respectful and empathetic.
3. Establish a Paid Advisory Board of Diverse Community Members
To ensure that the research is grounded in the lived experiences of BIPOC and other underrepresented communities, establish an advisory board made up of diverse individuals who are compensated for their time and insights. This board can provide valuable feedback on study design, recruitment strategies, and interpretation of findings, ensuring that the research is both equitable and relevant. Structure these boards in a way that gives real power to the board, anonymity at key junctures, and with the understanding that even diverse patients can lean into Eurocentrism, White comfort, White adjacency and more. So even these boards can be too lighthanded in creating accountability measures, if asked.
4. Develop a Transparent Recruitment Strategy
Transparency is key to building trust. Researchers should develop and publicly share a recruitment strategy that outlines how they plan to include BIPOC and other underrepresented individuals in their study. This should include details on how they plan to overcome common barriers to participation, from transportation challenges to fears of exploitation.
5. Conduct Regular Self-Audits for Bias
Finally, researchers should commit to regular self-audits to check for biases in their work, from study design to data interpretation. These audits should be both individual and collective, involving the entire research team. The findings should be used to make ongoing improvements to the research process, ensuring that it remains as equitable as possible.
By implementing these action items, researchers can take meaningful steps toward making their work more inclusive and equitable, thereby producing research that is more accurate, relevant, ethical and timelessly impactful.