Online tool transforms patient experience in national cancer trials

In a step forward for patient-centered cancer research, a new pilot project reveals that 84% of participants had a positive experience using a newly developed online tool created by the Alliance for Clinical Trials in Oncology called the Participant Engagement Portal (PEP). Alliance created PEP to foster direct connection between cancer researchers and the individuals who volunteer for clinical studies. The goal was to make it easier for patients and clinicians to share information, deliver trial updates, and self-report on social risk factors. The results of this national project are published in JNCI Cancer Spectrum.

We know that participating in a clinical trial can feel overwhelming. By designing PEP directly with patients and advocates, we built a digital space that feels supportive, respectful and incredibly easy to use. This portal isn't just about recruiting more people into studies; it's about treating our participants as true partners in research."

Norah Crossnohere, PhD, MHS, lead author of the study and Assistant Professor in the Division of General Internal Medicine and member of the Cancer Control Program, The Ohio State University

PEP had excellent usability among participants, with 96% of users saying the platform was easy to access and 93% reporting its surveys were easy to complete. Most notably, 93% of participants agreed to be contacted for future research opportunities.

For this pilot project, PEP was tested as an optional component for participants in the Multi-Cancer Early Detection (MCED) Biobank Study (Alliance A212102), an ongoing national clinical trial looking into future blood tests that might detect certain cancers early. Out of 2,221 people in the biobank study, 899 participants (40%) chose to opt in to PEP. Beyond high satisfaction rates, the PEP pilot revealed several important findings:

• Gathering vital patient-centered data: The portal successfully gathered information on "social determinants of health," such as education, insurance status, housing stability, food insecurity, and financial concerns. Gathering these data helps researchers better understand how a patient's everyday environment affects their long-term cancer journey and treatment outcomes.
• Data sharing: Participants demonstrated a high willingness to securely share limited personal data. For example, all respondents (100%) provided their zip code and 94% were comfortable disclosing their ancestry or ethnic origin.
• Community vs. academic differences: PEP was most successful at local community clinics, outperforming larger academic medical centers in patient enrollment rate and participation.

Understanding how PEP works

PEP is a secure, user-friendly website built to support patients becoming more active partners in cancer research. Unlike traditional digital health tools focused on recruitment, PEP is specifically designed to support and enrich experiences of individuals already enrolled in a clinical trial.

The portal functions through several innovative features:

• Two-way communication: Traditionally, study information only flows one way. Instead, PEP creates a "bidirectional" bridge, allowing researchers to send patient-centered newsletters, study progress updates, and final study results directly to the participants in the method of their choosing.
• Password-free access: To eliminate frustration, PEP did not require usernames and passwords. Instead, patients receive a secure, unique web link, via text or email, that takes them straight to their portal and survey pages without requiring a login.
• Accessible and multilingual design: PEP was shaped by an advisory board of healthcare providers, researchers, patient advocates, and cancer patients and survivors. It uses plain language and colorful infographics, limiting medical jargon. PEP content and messaging is available in both English and Spanish, using a "transcreation" process to ensure the content is culturally meaningful and nuanced.

"We were eager to offer trial participants a format to allow connection to the study team," said Suzanne George, MD, senior author on the study 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 self-report key data elements, such as specific social and economic factors which may impact a person's cancer journey."

While the PEP pilot was a success, researchers noted that future versions must focus on reaching a more diverse group of patients, as PEP enrollees skewed more female and less ethnically diverse compared to the overall biobank study population. Moving forward, Alliance plans to build on these findings by creating educational videos for clinical staff and expanding PEP across more national clinical 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 and Associate Director of Operations of the Alliance Data Innovation Lab, a part of Alliance for Clinical Trials in Oncology. "This tool is a tangible step toward making clinical trials more transparent, collaborative, and hopefully more successful for the communities we serve."

PEP was funded by the Alliance for Clinical Trials in Oncology Foundation. It was also supported in part by Alliance Foundation Trials, LLC, and Genentech, a member of the Roche Group. N.L.C. received support from NCI award U24CA252977 during the period of this study.