W-09: The Development and Launch of a Unique Retention Focused Patient Centric Online Community for the TOMMORROW Study
Global Clinical Program Manager
Takeda Pharmaceuticals, Inc. United States
Creation of an engaging patient-centric online digital community for cognitively healthy study participants, their partners, and study site staff in the ongoing Alzheimer’s disease (AD) delay-of-onset study called TOMMORROW.
The study team designed a web portal that exemplifies the key elements of a community; sought approval from Institutional Review Boards (IRBs) and feedback from study sites and proxy patients; and launched an in-study online community for TOMMORROW study participants and their project partners.
To improve the experience of participants in an AD delay-of-onset study of long duration and infrequent site visits, and thereby maximize study participant retention, the TOMMORROW study team created an innovative, technology-focused online community. The key characteristics of what defines a community (including membership, sense of influence/mattering, fulfillment, and shared emotional connection) were incorporated into the in-study digital community. Online patient communities are social by design, enabling the exchange of ideas intended to further the shared experience of community members. Developing a community within the restrictions of an ongoing study presented many challenges including: participant confidentiality, legal, ethical and regulatory considerations, and IRB approval for all materials. The in-study community website launched for TOMMORROW participants, partners, and study sites addressed these challenges in several ways. Both internal study sponsor stakeholders (legal, regulatory) and central and local IRBs were engaged during the design phase to obtain their input and agreement with the study team’s communication guidelines and collaborative process for frequent subject-facing content review. To establish membership, a rigorous methodology was deployed to allow entry only to study participants, partners, and study site personnel. A sense of influence and importance was created by enabling community members to personalize their experience through choices and polling, and by providing them with demographic-specific, frequently refreshed written and video content, and study-related resources. Social tools including favoriting and recommendations from partners and local site staff and forwarding, anchor the community’s shared emotional connections. Restricting direct communication between study participants and maintaining member anonymity mitigated potential confidentiality breach yet did not limit the sense of an engaging forum for members.
The study team created a community that maintains the shared experience of social partnership through membership personalization, useful and engaging content, and digital social constructs, including sharing, favoriting, and community polling, while maintaining study participant confidentiality. This community offers members an engaging and interactive environment aimed at fostering a sense of belonging to an exclusive global study community, beyond the member’s own individual participation. Over time, the impact of this community on study subject engagement will be measured through member usage metrics, participant surveys, and study retention metrics.