A new pilot project published in JNCI Cancer Spectrum reveals that 84% of participants had a positive experience using the Participant Engagement Portal (PEP), an online tool developed by the Alliance for Clinical Trials in Oncology. The results were announced on Jun. 8 and highlight PEP's role in connecting cancer researchers with clinical trial volunteers to facilitate information sharing, deliver updates, and allow self-reporting of social risk factors.
The study found that PEP was highly usable, with 96% of users saying the platform was easy to access and 93% reporting its surveys were easy to complete. Additionally, 93% of participants agreed to be contacted for future research opportunities. For this pilot project, PEP was offered as an optional component within the Multi-Cancer Early Detection Biobank Study (Alliance A212102), a national clinical trial investigating blood tests for early cancer detection. Of the 2,221 people enrolled in the biobank study, 899 participants—about 40%—opted into using PEP.
PEP is described as a secure and user-friendly website designed not just for recruitment but also to support individuals already enrolled in clinical trials by enhancing their engagement and participation. The portal includes features that enable patients to directly connect with study teams and self-report key data elements such as social and economic factors impacting their cancer journey.
"We were eager to offer trial participants a format to allow connection to the study team," said Suzanne George, MD, senior author on the project and Professor of Medicine at Harvard Medical School. "Nearly all participants who engaged with the tool opted in for recontact for future research, which allows the ability to build a research community. PEP gives patients a direct way to self-report key data elements, such as specific social and economic factors which may impact a person's cancer journey."
Researchers noted that while initial results were positive, future iterations should focus on reaching more diverse patient populations since current enrollees skewed more female and less ethnically diverse than those in the overall biobank study population. Plans include developing educational videos for clinical staff and expanding use of PEP across additional national trials.
"The Alliance connects thousands of cancer specialists across North America, and PEP provides us with a scalable roadmap for modernizing how we interact with our study participants," said Nancy Campbell, MSN, BSN, co-author on the project and Associate Director of Operations at Alliance Data Innovation Lab within Alliance for Clinical Trials in Oncology.
