UPenn Shares Best Practices for DE&I Strategy in New Guidelines
Inspired by lackluster efforts to improve diversity, equity and inclusion (DE&I) in clinical research, two centers at the University of Pennsylvania (UPenn) have moved to publish the core methodologies and practices they developed to boost DE&I within their trials.
In 2021, UPenn’s Palliative and Advanced Illness Research Center (PAIR) and Center for Health Incentives and Behavioral Economics (CHIBE) formed a voluntary working group with the joint goal of establishing a comprehensive, battle-tested set of best practices and guidelines for DE&I. Three years later, PAIR and CHIBE’s system is now published as a paper in the Journal of General Internal Medicine and as a toolkit on their websites. It provides guidance across five key areas that address critical barriers faced by underrepresented populations and take social determinants of health into account:
- Participant incentives and payments
- Language interpretation and translation
- Plain language in trial communications
- Study material readability
- Inclusive language in scientific communications
For instance, the guidelines stress the importance of making multiple payment methods available for participants, as some lower socioeconomic status groups may be unbanked or underbanked. Noncash payments may make things especially difficult for some patients, such as those who don’t have bank access or a secure place to receive mail and those with unstable housing situations, UPenn says in its paper.
UPenn also advises its study teams to investigate costs and fees associated with payment methods and communicate these to participants, in addition to clearly notifying patients about payment restrictions/delays and making payments as soon as possible.
It also recommends considering higher payouts on final study visits, as this may encourage participants to see a trial through to the end. Lastly, UPenn recommends proactively developing patient cost-cutting strategies, such as bringing trials closer to participants and providing food, transportation and on-site child and elder care services.
The system also lays out a plain language approach for sharing trial information with patients.
“Plain language makes it easier for people to find what they need, understand what they find and use what they find to meet their needs,” the paper reads. “This is critical in research, as up to 90 percent of U.S. adults have limited health literacy and approximately 30 million people in the U.S. have below-basic literacy, which can hamper the understanding of research.”
First, identify the audience, activity (such as answering a survey) and information they want to know (such as time it takes to complete). Then, carefully select your words. Choose consistent, familiar words that are one to two syllables and separate noun strings. Third, design sentences and paragraphs to use the active voice, shorten phrases and place subjects, verbs and objects close together, with sentences limited to eight to 10 words and paragraphs confined to three to five sentences. Lastly, assess the reading level of trial materials using a readability calculator, which can be found online; UPenn advises a 6th to 8th grade reading level for most general populations.
Beyond the guidelines, UPenn’s DE&I system also utilizes an internal consultation service established to augment diversity efforts. The service, Practicing Equitable Research and Knowledge Sharing (PERKS), connects center affiliates with experts when they’ve hit a diversity-related snag or need DE&I advice, such as when trial samples aren’t representative or when considering health equity in grants.
In the future, UPenn says its working group will release a community engagement case study and a guide to patient centricity, as well as a survey on understanding the patient perspective on payments and incentives.
“Diversity, inclusion and access are critical values for the conduct of research that promotes justice and health equity. These values can be operationalized in research through organizational commitment that combines bottom-up and top-down approaches, and through partnerships across organizations that promote mutual learning and synergy across efforts,” the paper concludes.
Read the full paper here.
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