Direct-to-Patient Outreach Shows Promise in Addressing Lupus Trial Disparities
A new survey reveals that leveraging trusted community figures and targeted digital campaigns may be more effective than broad strategies in improving racial and ethnic representation in lupus clinical trials.
CHICAGO — Direct-to-patient strategies appear to be a more effective approach to minimizing racial and ethnic disparities in lupus clinical trial recruitment than widespread campaigns, according to data unveiled at ACR Convergence 2025. The findings, stemming from an annual survey conducted by Lupus Therapeutics in Miami and the Lupus Clinical Investigators Network (LuCIN), highlight a critical need to rethink traditional recruitment methods.
Researchers, led by Brandon Jackson, MPH, clinical trial manager for Lupus Therapeutics, sought to identify operational challenges hindering clinical trial participation and understand why racial and ethnic groups disproportionately affected by lupus remain underrepresented in research. The survey, distributed to 124 clinical staff across 60 North American sites between December 17, 2024, and February 13, 2025, explored perceptions of social media, AI, and various recruitment strategies.
“The goals of the annual survey at a high level are just to really ask ourselves, what would be most important to inform the lupus community, given the unique opportunity we have to canvas LuCIN investigators and clinical site staff,” Jackson explained.
The data revealed a significant disconnect between the perceived potential of social media and its actual effectiveness. While 56% of respondents indicated they had the capacity to utilize social media for recruitment, 61% found it ineffective in that capacity. Notably, 98% of respondents reported that Institutional Review Board (IRB) approval was required before using social media for recruitment purposes.
Usage rates varied, with 48% of respondents employing social media for recruitment, 28% utilizing video content, 27% sharing professional content, and 25% investing in paid advertisements. AI adoption was lower, with 34% reporting its use in their current workflows. Translation support emerged as the most common AI application (60%), followed by automated chart review (59%), documentation assistance (58%), and note-taking (53%). However, institutional restrictions, ethics approvals, a lack of trained personnel, and low patient yield were identified as key barriers to broader AI implementation.
The survey also uncovered challenges related to data management, with 73% of respondents citing issues with Electronic Data Capture query resolution and 48% reporting difficulties with data transfer to Electronic Medical Records (EMRs). These findings, researchers suggest, point to an opportunity for AI to streamline processes and improve efficiency.
Interestingly, third-party referral campaigns, often employed by industry partners, were deemed ineffective by 84% of respondents. In contrast, 81% supported the use of online educational materials, and 46% favored patient navigation programs to enhance clinical trial recruitment.
“LuCIN respondents want to see more person-to-person communication strategies, like enabling influencer or trusted community leader partnerships, and enabling digital campaigns through patient support groups,” Jackson stated. Respondents consistently emphasized the importance of engaging underserved communities through trusted voices and targeted digital initiatives.
Jackson emphasized the need for a shift in strategy, particularly regarding social media. “We see a lot of industry sponsors using third-party referral campaigns to find patients for clinical trials. Based on this data, you can hear from our responses directly that it is not effective at reaching the target audience.”
For further information, Brandon Jackson, MPH, can be reached at [email protected].
Source: Jackson B. Abstract 1915. Presented at: ACR Convergence 2025; Oct 24-29, 2025; Chicago.
Disclosure: Jackson reports no relevant financial disclosures.
