Presentation (CTI)

OBJECTIVES: In drug development, real-world evidence (RWE) is indispensable, but maintaining participant engagement in observational studies remains a challenge. This study examines the impact of returning data insights to study participants on patient and caregiver engagement.
METHODS: The PicnicHealth patient platform provides participants with access to their collected medical records and enables observational research participation. This platform creates a feedback loop delivering aggregate insights derived from data collected back to participants. Three research summary campaigns (“sharebacks”) for patients (multiple sclerosis [MS], Huntington's, early breast cancer [eBC]) and two caregiver sharebacks (Alzheimer’s, disease-agnostic) were tested using various information delivery (content, opt-in, and monthly product emails) and content (data dashboards, static visualizations, summaries) methods. Qualitative interviews with select participants with Huntington's were performed. Engagement metrics (survey completion [SC], email open rate [EOR], and summary click rate [SCR]) and qualitative themes were analyzed.
RESULTS: “Share your data to see your data” campaigns linking interactive data dashboards drove notable increases in SCs, particularly for Alzheimer’s caregivers (5x) and patients with MS (3.5x), with responses spiking approximately two days post-shareback email. Shareback emails resulted in a 72% EOR and 34% SCR for Alzheimer’s caregivers and 67% EOR/30% SCR for patients with MS. In contrast, the eBC shareback experienced a 2.1x decrease in SCs in the two weeks post-email. A Huntington’s opt-in email achieved a 48% EOR/22% SCR, followed by a 83% EOR/48% SCR for the shareback. A caregiver shareback linked in a monthly product email only garnered a 4% SCR. Qualitative feedback was generally positive; participants indicated interest in additional sharebacks with increased detail.
CONCLUSIONS: Empowering patients with research insights boosts participation, fosters patient-centric research designs, and strengthens community engagement, however engagement depends on content, placement, and format. Future efforts should focus on further understanding how targeted and incentivized sharebacks can enhance research participation.