A digital platform designed to strengthen communication helped keep clinical trial participants engaged in a national oncology study, according to findings published in the journal JNCI Cancer Spectrum. The Participant Engagement Portal (PEP), developed by the Alliance for Clinical Trials in Oncology, was tested as part of the National Cancer Institute-sponsored Multi-Cancer Early Detection Biobank Study (A212102). Among participants who enrolled to use PEP, 84% reported a positive experience, 96% said it was easy to access, 93% found surveys easy to complete, and 93% agreed to be contacted about future research opportunities.

The findings provide a positive snapshot that digital tools designed to address participant needs can help improve their engagement throughout the term of a clinical trail, and aid in the the collection of data that can improve the efficiency and long-term value of oncology trials.

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

The intent in developing PEP was to find new ways to improve the experience of patients enrolled in clinical trials. Digital tools have the ability to simplify access to study materials, streamline data collection, aid in remote patient monitoring, and improve communication between researchers and trial participants. Specifically, PEP was created to improve engagement, which the researchers defined as sustained and beneficial interaction between participants and researchers over the course of the study. Unlike many digital tools focused on recruitment, PEP was designed to help researchers learn directly from patient experiences and maintain communication after trial enrollment.

“Historically, there are very few, if any, instances of trials providing consistent, longitudinal communication back to the patient about the overall clinical trial,” George told Inside Precision Medicine. “The large percentage of people reporting positive experience suggests PEP’s content and delivery methods resonate with them.”

To develop PEP, The Alliance used an iterative user-centered process that included advisory board input, usability testing with 19 patients, including 12 Spanish-speaking participants, and refinement using plain-language and health-literacy principles. Rather than requiring usernames and passwords, participants received secure links by text or email that allowed direct access to portal content and surveys.

The pilot was conducted within the MCED Biobank Study, an ongoing national clinical trial investigating future blood tests for the early detection of cancer. Of the total 2,221 study people enrolled in the trial, 40% chose to use PEP. Of the 899 users, 361 completed demographic questionnaires and 310 completed surveys addressing social determinants of health.

One of the portal’s central features was bidirectional communication that included trial participants receiving study updates, newsletters, and research information. PEP users could also provide feedback and report personal information that could help researchers better understand their experiences. According to George, participant feedback has influenced both the platform’s design and future patient engagement strategies.

“As noted in our manuscript, we conducted one-on-one focused interviews with people to evaluate the PEP on all levels, from communication methods and content to data security and privacy,” she said. “Through these findings, we were able to understand the need to transcreate documents into Spanish for cultural meaning and contextual relevance, rather than just translate them word-for-word.”

Feedback also led researchers to reconsider maintaining study-specific websites.

“Participant feedback substantiated our decision to eliminate dedicated study-specific PEP website(s),” George said. “Instead, we are transitioning to an IRB-approved newsletter format delivered directly to study participants for ongoing communication and education.”

The study also showed that people using PEP were willing to provide information about social determinants of health (SDoH), such as education, insurance status, housing stability, food insecurity, and financial concerns.

“If a trial chooses to formally integrate SDoH metrics, they could be included as protocol-directed surveys done via PEP, making results directly available to the protocol investigators,” George said. “Self-reported information is critical because it allows researchers to look beyond the actual study biology.”

Collecting this kind of information can help identify barriers that may affect treatment adherence, including transportation challenges, childcare responsibilities, and financial stress.

Another notable finding was that community-based practices enrolled a higher proportion of eligible participants into PEP than academic medical centers. The reasons remain under evaluation, but George suggested that established relationships between patients and local care teams may contribute to greater acceptance of the platform.

Further, the researchers found that 98% of participants were open to health-related follow-up communications. The research team believe this is an important outcome because it creates opportunities for future re-engagement and continued participation in research activities.

While the data from the pilot showed meaningful patient engagement, there were some limitations. Participants who enrolled in PEP were more likely to be female and White than the broader study population, raising questions about whether the data would be representative across diverse populations.

“Looking forward, PEP would ideally become a standard core functionality in all oncology studies,” George noted. “However, we will need to continue to expand outreach and continue to engage the participant community, to ensure we are indeed reaching all of those who would like to be part of such a platform.”