E-Newsletter - October 2022
Update on New Alliance Initiative


The Alliance Participant Engagement Portal (PEP), an innovative effort launched under the ICAREdata® project within the Alliance Data Innovation Lab, is a web-based tool with the overarching goal of connecting trial participants to their clinical trial and providing bidirectional communication at key touch points throughout out the trial. PEP focuses on empowering Alliance clinical trial participants across all demographics and populations. By engaging participants in selected trials, the Alliance can learn from their journey to help researchers help other patients. PEP strives to assess the diversity of Alliance clinical trial participants and assess use of the tool based on those demographics. PEP allows people who would otherwise not engage in an online environment to be connected to their clinical trial. Future versions of PEP will be refined based on ongoing assessments and feedback to better engage varied clinical trial participant populations.

Currently, PEP is actively enrolling patients participating in the Alliance A212102: Blinded Reference Set for Multicancer Early Detection Blood Tests (MCED Biobank Study). Participants are letting the PEP team know if they would like to be contacted for future research and for updates on health, in addition to completing surveys on demographics and social determinants of health. The PEP team is working on ways to engage participants further.

An ideal aspect of PEP is that very little that needs to be done at the clinical site level other than asking participants to complete a contact card, which indicates how the participant wishes to receive PEP messaging - by text or e-mail. Sites e-mail that card through a HIPAA secure system to the centralized PEP team for registration and then the site’s work is complete. Once registered, participants can access surveys and any information on the PEP website. Participants can also receive IRB-approved communications throughout the course of their trial participation and beyond. Approved updates about the participant's study will also be sent through PEP to keep them connected to the trial and to demonstrate how valuable their participation is to researchers.

Future versions for PEP will include Spanish translation, the ability to add a support person to access PEP, and new forms of educational materials such as videos and other multimedia options. The PEP team plans to conduct focus groups to solicit feedback and make future improvements to PEP. As the environment of clinical trials is changing, the PEP team is exploring new methods to engage patients who enroll in Alliance trials. PEP promotes inclusivity with a platform that has the ability to meet these goals in a creative and thoughtful way.

PEP is being led by Suzanne George, MD, Alliance Interim Group Chair, with support from Nancy Campbell, MSM, RN, Clinical Research Nurse Manager, ICAREdata®, and the Alliance Patient Advocate Committee. The Alliance gratefully acknowledges the MITRE Corporation and Genentech for their work and support in creating PEP.



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