Can a Peer Education Program Improve Patient Engagement and Health Equity in Lupus Research?

Rheumatology Network interviewed Caroline Donovan, Manager of Patient Engagement at Lupus Research Alliance, to discuss the recent study “Feasibility and Efficacy of a Peer Education Program to Improve Patient Engagement in Lupus Clinical Trials Goal.” The study focused on the importance of improving awareness, knowledge, and enrollment of minorities in lupus clinical trials via the Lupus Therapeutics' Patient Advocates for Lupus Studies (LT-PALS) program.

Enrollment in clinical trials across all disease states, particularly in lupus, continues to be an ongoing challenge.

“Specifically, it's been challenging to make sure that we are enrolling individuals representative of the lupus population,” Donovan noted. “We you know that in order for us to have any sort of new treatments, or even cures, there has to be clinical trial participation. There’s a very large need for more targeted and specific treatments for the lupus population.”

The PALS program, performed at 5 academic medical centers, utilized a 2-arm, randomized pre-test, post-test, and follow-up study design. Investigators evaluated 4 cognitive outcomes: knowledge, self-efficacy, intentions, and attitudes. Those who participated in the program had statistically higher attitudes and knowledge about clinical trials, were more likely to intend to participate in these trials, and were more likely to follow through with the act of participating.

“Taking a step back, 68% of individuals who went through the program identified as Black or African American and 13% identified as Hispanic,” Donovan explained. “Those numbers are significantly higher than the population that you see participate in clinical trials. So, we were really drawing on the social support theory to develop this program, which has been shown to be effective in terms of how women of color, specifically Black or African American women, engage with the healthcare system. To our knowledge that had always been applied standard of care. We were then taking that and applying it specifically to clinical trials. I think the fact that we saw such high representation of individuals of color in this is really critical because as we know that this predominantly impacts women of color.”

These patients are often diagnosed at a later stage of disease and have worse morbidity and mortality. Therefore, including previously underrepresented patients in clinical trial populations may help to obtain health equity in lupus.