Research is a driving force of medical progress—but is it truly inclusive of the voices and experiences of those it seeks to help?
The way research is conducted can often leave out important voices, like people from underrepresented racial and ethnic backgrounds, those who speak languages other than English, or those with limited literacy. Rachel Kohn, MD, MSCE, an assistant professor of Medicine in the Division of Pulmonary, Allergy and Critical Care and core faculty in Penn’s Palliative and Advanced Illness Research (PAIR) Center, is looking to change that.
Unveiling inequities & decoding bias at the source
Rachel Kohn, MD, MSCE
Health care research, while indispensable for advancing medical knowledge and improving patient outcomes, has long grappled with a glaring issue—the lack of diversity and inclusivity. "In health care, we aim to leave no one behind. But when certain demographics are excluded or marginalized in research, we're failing to uphold that promise," said Kohn. A study led by Kohn, recently published in the Journal of General Internal Medicine, addresses the underrepresentation and disparities prevalent in research practices.
Working with a group of colleagues through Penn’s Joint Research Practices, Kohn developed a clear goal: to make academic research more inclusive, equitable, and accessible for everyone. What would follow was years of investigation to discuss findings and refine their focus. Subgroups were formed to delve into specific areas to ensure a well-rounded perspective. What Kohn and colleagues have now developed, is a set of guidelines covering everything from how participants are paid to how research findings are communicated.
The group of staff who have seized the opportunity to make a difference in research diversity is made up predominately of volunteers. Adina Lieberman, MPH, the director of the PAIR Center’s Diversity, Equity, and Inclusion Program Development, who provides operational leadership, says although researchers most often have the best intentions, taking a route that is familiar to them has, in the past, been the default approach to diversity, equity, and inclusion. “In my twenty years at Penn overseeing, auditing, and conducting human subjects research, I have heard time and again that an operational decision was made because it was the ’lowest hanging fruit’. I understand why this happens and admit I have even said it many times in my career,” said Lieberman. “Over the years, when I feel the urge to even mention fruit, I interpret it as a signal to slow down and reflect on the unintended consequences of our decisions—to the communities for which we are conducting this research, to the future researchers that will default to our tried and true practices, to ourselves and to our overall mission to do good in this world through our research.”
Kohn raises another concern in the field and its impact on diversity, equity, and inclusion in academic research: artificial intelligence, or AI.
AI models don’t begin full of information—they must be fed source material to interpret. What if they are continually fed data that is biased or misinformed?
“Research findings are more and more frequently being fed into AI models to serve as clinical decision support systems for patient care which can have far-reaching effects,” explains Kohn. But concerns are heightened at the possibility of biased data being fed into AI.
“That biased data could propagate into clinical decision support systems, research questions, trial eligibility, risk adjustment, or hospital and quality improvement assessment. One major concern about this process is that clinicians rarely know the source of the data and assume that they should take the decision support recommendation at face value without pausing to consider the algorithm inputs. ‘Algorithmic bias’ is a hugely burgeoning field trying to address this very issue,” explained Kohn.
Advancing representation in research at Penn Medicine and beyond
In fact, another Penn team recently published research showing the potential impacts of clinical algorithms on racial and ethnic health disparities, even when race and ethnicity are not used as variables in those algorithms. Another recent clinical trial allowed Penn to reimburse trial participants for gas, parking, plane or bus tickets, hotels, and other out-of-pocket travel and lodging costs related to clinical trial participation for the patient and a companion. Meanwhile, a recent grant from the National Institutes for Health will fund Penn research that will be the first major Alzheimer’s disease genetics cohort for Asian Americans and Asian Canadians, populations underrepresented in Alzheimer’s research.
Ongoing research spearheaded by Kohn will further contribute to prioritizing diversity, equity, and inclusion within academic research endeavors, ensuring that Penn and other institutions remain vigilant in addressing and mitigating potential biases and disparities.
Guiding principles for inclusivity in research
The team’s years of hard work culminated in a set of robust guidelines, addressing key areas critical for promoting inclusivity and access in research endeavors. Kohn highlights some key recommendations:
Participant Payment and Incentives: Research participants deserve fair compensation for their time and effort. The JRP recommends offering multiple payment options, including cash, to accommodate different needs. They also suggest paying participants promptly and transparently to build trust.
Language Interpretation and Translation: Language should never be a barrier to research participation. The JRP advises researchers to identify the languages spoken by their target population and provide interpretation and translation services as needed. This ensures that everyone can understand, contribute to, and participate in the research.
Plain Language in Research Communications: Research materials can be full of jargon and complex language. The JRP encourages researchers to use plain language that is easy for everyone to understand. This means using simple words and sentences, avoiding technical terms, and keeping paragraphs short.
Readability of Study Materials: Reading should be easy for everyone, regardless of their literacy level. The JRP recommends assessing the reading level of research materials and making adjustments to ensure they are accessible to all.
Inclusive Language for Scientific Communications: Words matter. The JRP provides guidance on using inclusive language that respects people's identities and experiences. This includes using terms that are neutral or positive, avoiding stereotypes, and putting people first.
A future of equitable research
As Kohn reflects on the complex journey of compiling these guidelines, she acknowledges the crucial role played by institutional support. With leaders like Scott Halpern, MD, PhD, the John M. Eisenberg Professor of Medicine, Epidemiology, and Medical Ethics and Health Policy and the Founding Director of the PAIR Center, and Kevin Volpp, MD, PhD, the Founding Director of Penn’s Center for Health Incentives and Behavioral Economics (CHIBE), championing their cause, the vision of equitable research practices became a reality. Together, they hope to keep Penn on the leading edge of this work in academia.
“This work, both clinically and from a research perspective, has breathed new life, passion, and perspective into my career, becoming a real focal point of my current research pursuits,” said Kohn. “I think this is an area where we can truly make a difference both in our own local environments and on a larger scale and go back to that initial purpose of wanting to help people.”
You can read the full study here: Operationalizing Equity Study.