Online Participant Engagement Portal Achieves 84% Satisfaction Rate in National Cancer Clinical Trials
核心洞察
A pilot study of the Participant Engagement Portal (搜索) (PEP) found that 84% of cancer (搜索) clinical trial participants reported a positive experience using the digital tool.
The portal achieved 96% ease-of-access ratings and 93% survey completion ease, with 93% of users agreeing to be contacted for future research.
PEP successfully gathered social determinants of health data, with 100% of respondents providing zip codes and 94% disclosing ancestry or ethnic origin.
A newly developed digital platform designed to strengthen the connection between cancer (搜索) researchers and clinical trial volunteers has demonstrated strong usability and satisfaction in a national pilot project, with 84% of participants reporting a positive experience. The Participant Engagement Portal (搜索) (PEP), created by the Alliance for Clinical Trials in Oncology, was tested as an optional component of the Multi-Cancer Early Detection (MCED) Biobank Study (Alliance A212102), and results were published in JNCI Cancer Spectrum.
"We know that participating in a clinical trial can feel overwhelming," said Norah Crossnohere, PhD, MHS, lead author of the study and Assistant Professor in the Division of General Internal Medicine and member of the Cancer (搜索) Control Program at The Ohio State University. "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."
Strong Usability Metrics and Willingness to Engage
The pilot enrolled 899 participants out of 2,221 individuals in the broader biobank study, representing a 40% opt-in rate. Among those who used PEP, the usability metrics were striking: 96% of users reported the platform was easy to access, and 93% said its surveys were easy to complete. Most notably, 93% of participants agreed to be contacted for future research opportunities, signaling a high degree of trust and sustained engagement.
The portal successfully captured critical patient-centered data on social determinants of health, including education level, insurance status, housing stability, food insecurity, and financial concerns. Researchers emphasized that such data are essential for understanding how a patient's everyday environment influences long-term cancer (搜索) outcomes and treatment trajectories.
Data Sharing and Community Clinic Performance
Participants demonstrated a remarkable willingness to share personal information through the secure platform. All respondents—100%—provided their zip code, and 94% were comfortable disclosing their ancestry or ethnic origin. This level of transparency offers researchers unprecedented insight into the socioeconomic and demographic factors shaping cancer (搜索) care.
An unexpected finding was that PEP achieved greater success at local community clinics compared to larger academic medical centers, outperforming them in both patient enrollment rate and overall participation. This suggests that community-based settings may be particularly receptive to digital tools that foster bidirectional communication between patients and research teams.
Innovative Design Features
PEP distinguishes itself from traditional digital health tools by focusing on enriching the experience of patients already enrolled in trials rather than solely on recruitment. Key design elements include a password-free access system, where patients receive a secure, unique web link via text or email that takes them directly to their portal without requiring a login. The platform also enables two-way communication, allowing researchers to send patient-centered newsletters, study progress updates, and final study results directly to participants.
The portal was shaped by an advisory board comprising healthcare providers, researchers, patient advocates, and cancer (搜索) patients and survivors. It employs plain language and colorful infographics while minimizing medical jargon. Content is available in both English and Spanish, developed through a "transcreation" process to ensure cultural relevance and nuance.
"We were eager to offer trial participants a format to allow connection to the study team," said Suzanne George, MD, senior author 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 (搜索) journey."
Limitations and Future Directions
Despite the pilot's success, researchers acknowledged that PEP enrollees skewed more female and less ethnically diverse compared to the overall biobank study population. Addressing this demographic gap is a priority for future iterations. The Alliance plans to develop educational videos for clinical staff and expand PEP across additional national clinical trials.
"The Alliance connects thousands of cancer (搜索) 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. "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, with additional support from Alliance Foundation Trials, LLC, and Genentech, a member of the Roche Group. Norah Crossnohere received support from NCI award U24CA252977 during the study period.
