Penn teams push to make research more inclusive

Research is a driving force for medical progress, but is it truly inclusive of the voices and experiences of those it aims to help?

The way research is conducted can often leave out important voices, such as those from underrepresented racial and ethnic backgrounds, those who speak languages ​​other than English, or those with limited literacy. Rachel Kohn, MD, MSCE, assistant professor of medicine in the Division of Pulmonary, Allergy, and Critical Care and core faculty member of Penn’s Center for Palliative and Advanced Illness Research (PAIR), is looking to change that.

Revealing inequalities and decoding bias at the source

Healthcare research, while indispensable to advancing medical knowledge and improving patient outcomes, has long faced a glaring problem: a lack of diversity and inclusion. “In health care, we aim to leave no one behind. But when certain demographics are excluded or marginalized in research, we’re not fulfilling that promise,” Kohn said. 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 to all. What would follow were years of research to discuss the findings and refine the approach. Subgroups were formed to delve into specific areas to ensure a well-rounded perspective. What Kohn and his colleagues have now developed is a set of guidelines that cover everything from how participants are paid to how research results are communicated.

The group of staff who have taken the opportunity to make a difference in research diversity is made up mainly of volunteers. Adina Lieberman, MPH, director of the PAIR Center’s Diversity, Equity and Inclusion Development Program, which provides operational leadership, says that while researchers often have the best intentions, in the past a route has been taken that is familiar the default approach to diversity, equity and inclusion. “In my twenty years at Penn supervising, auditing, and conducting human subjects research, I have heard time and time again that an operational decision was made because it was the ‘low-hanging fruit.’ and I’ve said all of that many times throughout my career,” Lieberman said. “Over the years, when I feel the need to mention the fruit, I interpret it as a signal to slow down and reflect on the unintended consequences of our decisions: for the communities for which we are conducting this research, for future researchers who 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 do not start out full of information, but must be fed with source material to interpret them. What if they are continually receiving biased or misinformed data?

“Research results are increasingly incorporated into AI models to serve as clinical decision support systems for patient care that can have far-reaching effects,” explains Kohn. But concern is growing over the potential for biased data to feed into AI.

“These biased data could propagate into clinical decision support systems, research questions, trial eligibility, risk adjustment, or hospital quality improvement assessment. A major concern of this process is that clinicians rarely know the source of the data and assume they should make the decision support recommendation without stopping to consider the algorithm’s inputs.“Algorithmic bias” is a hugely growing field that tries to address that very problem,” Kohn explained.

Advancing research representation at Penn Medicine and beyond

Indeed, 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 patient participation in the clinical trial and a companion. Meanwhile, a recent grant from the National Institutes of Health will fund Penn research that will be the first large genetic cohort of Alzheimer’s disease for Asian Americans and Asian Canadians, populations underrepresented in Alzheimer’s research.

The ongoing research led by Kohn will further contribute to prioritizing diversity, equity and inclusion in academic research efforts, ensuring that Penn and other institutions remain vigilant in addressing and mitigating potential biases and disparities.

Guiding principles for inclusion in research

The team’s years of hard work culminated in a set of robust guidelines, addressing key areas critical to promoting inclusion and access in research efforts. 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 meet different needs. They also suggest paying participants quickly and transparently to build trust.

Linguistic interpretation and translation: Language should never be a barrier to participation in research. 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 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 simple language that is easy for everyone to understand. This means using simple words and phrases, 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 everyone.

Inclusive language for scientific communication: Words matter. The JRP provides guidance on using inclusive language that respects people’s identities and experiences. This includes using neutral or positive terms, avoiding stereotypes and putting people first.

A future of equitable research

As Kohn reflects on the complex journey of compiling these guidelines, he acknowledges the crucial role that institutional support plays. With leaders including Scott Halpern, MD, PhD, the John M. Eisenberg Professor of Medicine, Epidemiology, and Medical Ethics and Health Policy and founding director of the PAIR Center, and Kevin Volpp, MD, PhD, 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 at the forefront 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,” said Kohn. “I think this is an area where we can really make a difference both in our own local environments and on a larger scale and get back to the original purpose of wanting to help people.”

You can read the full study here.