The landscape of cancer research is evolving as institutions respond to growing patient interest in becoming active research partners rather than passive participants. The Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network, established in 2019 as part of the Cancer Moonshot Initiative, is leading this transformation through five National Cancer Institute-funded research centers.
"Traditionally, we've done research in a passive framework, where patients sign consent, they participate, and then they go back to their lives," explains Dr. Vinayak Venkataraman, sarcoma pathways director at Dana-Farber Cancer Institute. "Patients want to have a more direct role in research, not just participating but also being partners in that research."
Network Priorities and Implementation Strategies
The PE-CGS Network, coordinated by The Ohio State University, has identified five crucial priorities for advancing patient engagement in cancer research. These include customizing educational materials, measuring engagement effectiveness, developing optimal engagement strategies, addressing cancer disparities, and personalizing genomic data communication.
A 2021 stakeholder meeting involving 138 participants—including scientists, clinicians, and patient representatives—established specific recommendations for each priority. For example, the network advocates for culturally sensitive language, multilingual materials, and visual aids to support informed consent processes.
Member institutions are already implementing innovative solutions. The Hugo Health digital platform enables two-way patient communication, while the Count Me In PE-CGS Center utilizes feedback loops to incorporate community input into study design.
Addressing Implementation Challenges
Despite this framework, several significant obstacles remain in implementing patient-partnered research effectively:
Consent Process Complexities
The current consent process remains cumbersome, often requiring participants to review documents exceeding 5,000 words. "Many consent forms have verbose and legal jargon that is difficult for patients, or even providers, to understand," notes Dr. Venkataraman. The network is exploring more accessible approaches, such as the National Institutes of Health All of Us program's interactive consent model.
Data Access and Sharing Barriers
While patients can access their health records, institutional barriers often prevent efficient data sharing between research centers. The varying rules and systems across institutions create time-consuming and costly processes for researchers attempting to access and analyze patient data.
Electronic Health Record Interoperability
The lack of standardization between electronic health record systems presents another significant challenge. Current initiatives from the Office of National Coordinator for Health Information Technology aim to address these interoperability issues through frameworks like the Trusted Exchange Framework and Common Agreement.
Looking forward, Dr. Venkataraman emphasizes the importance of continued innovation: "We're in an era where patient engagement and empowerment are important to making advances in rare and aggressive diseases. Using both technology and more culturally appropriate research methods, we can make significant advances in the future."
