Guest post by Kevin B. Johnson, MD, MS, Cornelius Vanderbilt Professor and Chair of Biomedical Informatics, and Professor of Pediatrics at Vanderbilt University Medical Center.
I started Informatics in the Round for a lay audience seeking to understand the world of biomedical informatics. There are other podcasts out there about the latest and the greatest in research, but I really wanted to create a space where people could learn more about the field and hear from leaders who continue to inspire me.
Earlier this month, #ShutDownSTEM gave me the opportunity to bring together academicians and biomedical informatics leaders to outline what our role as informaticians should be in the fight against racism in all its forms. One of the leaders who joined me in that discussion and encouraged me to share this with all of you was NLM Director Patricia Flatley Brennan, RN, PhD.
I often refer to Dr. Brennan as the newly minted matriarch of our field. Her contributions to this recent discussion were, not surprisingly, incredibly insightful. The entire conversation can be found here.
As chair of the Department of Biomedical Informatics at Vanderbilt and an informatics evangelist, I want — no, I need — to share some highlights from this conversation in the hope of broadening the discussion. There is much we haven’t done that is clearly within both our skill set and reach.
How Bioinformatics Can Support an Equitable Future
I started the conversation by setting the stage for a discussion of how biomedical informatics can play a role in the fight against racism. As a medical specialty, the field is about aggregating and transforming health data to create knowledge, improve lives, and build a world with better health outcomes.
We’ve been an equal opportunity field that thinks of technology as the great equalizer when it comes to health care. But we’ve missed a key opportunity to embrace equity along with equality. In an equitable world, the benefits of informatics would not simply be made available to all equally; rather, we would recognize, embrace, and adapt solutions to the unique needs of the many in our society who cannot type, who don’t speak English, who fear giving out private information to the government because of historical missteps, or who have jobs that challenge our traditional care models.
To respond to the realities of our built environment, our field needs to understand where the people are and what they need. From a technology standpoint, this requires designing models that reflect more than just the average care needs. We need to build technologies based on an understanding of how diverse people are, as opposed to how similar we are. We need to think about the presumptions that we make, often unconsciously, and how our presumptions get built into technologies.
A challenge that we often face in the field of informatics is that we spend a lot of time on the technology side and don’t pay enough attention to the people side. Some call this the “softer side,” and it’s often pushed to the side with the intention to address it later. Unconscious bias can show up in very subtle ways, such as sending out a confirmation email and presuming that there will be a response or assuming that a patient even has a personal email address. And we often picture the nuclear family when we think about relationships.
We need to immerse ourselves in diverse stories and relationships so that we can see how technology fits into people’s lives and how to create tools to meet their needs. For example, how do we help young-adult graduates of the foster care system collect and summarize their past medical histories from what could be a dozen different parents?
As we think about how health care systems are built and experienced, let’s take into consideration factors that impact who is represented at all levels of those systems. Our actions are rarely nefarious and are quickly corrected when called out as biased, in most cases. But, unfortunately, groups that lack diversity don’t have stakeholders who easily notice when actions leave underrepresented groups behind. Where is our diversity in science?
During our conversation, we heard difficult messages from two younger Black faculty. One expressed fear that the issues that might propel them into a career in data science and informatics were not issues that would be rewarded through extramural funding and promotion. Another was convinced that the perception of academia as slow to embrace change, skeptical of new ideas, and mired in red tape was off-putting to people of color who historically have seen those behaviors lead to discriminatory actions.
Those are tough pills to swallow, but things we need to confront directly.
Throughout the conversation, we examined our privilege and how we can break down barriers and eliminate anti-Black racism with the goal of equity in mind. There is no single answer, but the best thing we can give to young people and to our colleagues is the capacity to be brave. We also discussed how people who experience privilege must be willing to use that privilege to build bridges and close the gap. We need to continue to be voices that say these issues matter.
As we strive for justice and meaningful change, we need to better inform ourselves about the perceptions of underrepresented groups that negatively affect their career choices. We need to narrow the research funding gap and examine the peer-driven study process, including biases in the review process and in publishing.
The National Library of Medicine uses grant mechanisms (G08, R01) to develop informatics to reduce health disparities and supports research that examines how information can be presented in culturally relevant ways. NLM’s data science work, including COVID-19 research, encourages researchers to develop techniques that illustrate the causes of and solutions to the health disparities that exist in the world today.
I encourage you to listen to the full discussion to hear more from our thoughtful panelists.
And I leave you with this challenge: What will you do today, or this year, to build bridges and close the gap on your team, in your workplace, and in your community?
Dr. Johnson received his MD from The Johns Hopkins Hospital in Baltimore and his MS in Medical Informatics from Stanford University. He is an internationally known scholar and educator in clinical informatics, having served as a board-certified pediatrician and consistently funded researcher as well as chief information officer during his tenure at Vanderbilt.
In addition to leadership roles in the American Academy of Pediatrics, the American Board of Pediatrics, the American Medical Informatics Association, and the National Academy of Medicine, Dr. Johnson serves as chair of the NLM Board of Scientific Counselors and sits on the NIH Council of Councils.