The Alliance for Clinical Trials in Oncology has created the Participant Engagement Portal (PEP) to foster direct connection between cancer researchers and the individuals who volunteer for clinical studies. The goal is to make it easier for patients and clinicians to share information, deliver trial updates, and self-report on social risk factors. Results from a pilot project reveals that 84% of participants had a positive experience using the new online tool.

The nonprofit Alliance unites more than 25,000 cancer specialists at 115 main institutions and 1,400 affiliates across the U.S. and Canada. It is part of the National Clinical Trials Network and a leading research base for the NCI Community Oncology Research Program.

Alliance PEP helps keep clinical trial participants engaged at key touch points during and after their enrollment in Alliance clinical trials. Registered participants can complete surveys and receive trial-specific communications and updates. Surveys distributed through PEP give participants the ability to self-report their demographic and social determinants of health information. PEP is partnered with several Alliance trials and is working on expanding its capabilities by partnering with other clinical trials.

“We know that participating in a clinical trial can feel overwhelming,” said Norah Crossnohere, Ph.D., M.H.S., lead author of the study, in a statement. “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,” added Crossnohere, an assistant professor in the Division of General Internal Medicine and a member of the Cancer Control Program at 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, 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. The researchers said that 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.

The researchers said that 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, M.D., senior author on the study project and professor of Medicine at Harvard Medical School, in a statement. “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, M.S.N., B.S.N., co-author and associate director of operations of the Alliance Data Innovation Lab, in a statement. “This tool is a tangible step toward making clinical trials more transparent, collaborative, and hopefully more successful for the communities we serve.”