At the CGC summit in 2023, Sui Huang from the Storming Cancer team gave an important talk about the balance between hypothesis driven research and research that generates data through novel techniques, without a hypothesis. The question Dr. Huang posed is, “are we drowning in data?”  In his talk, he pointed out that hypothesis driven research is on the decline, while new molecular techniques, deep sequencing, Crispr screens and spatial mapping, are allowing us to generate volumes of data that may not be useful in the moment it is generated—in part because it does not respond to a specific question or hypothesis.  The subtitle of the talk, “Ideas without data are useless but so is data without ideas,” frames a challenge to find the missing piece in our research endeavors, with the power to unite the capacity to generate data with a purpose or hypothesis to drive relevant research forward. Allowing the Cancer Grand Challenge research agenda to be influenced by the experiences and curiosities of the Patient Advocates are the clearest solution to Dr. Huang’s riddle.  

Inclusion and participation of Patient Advocates in PROMINENT will use a Community Based Participatory Research (CBPR) framework. Participatory research requires that affected stakeholders, like our Patient Advocates, play a key role in guiding the research agenda. We employ training and bidirectional communication between the Patient Advocates and Future Leaders to prepare them for participation in scientific meetings with the PROMINENT senior investigators. The Future Leaders provide monthly training sessions on basic topics (see videos). Patient Advocate have an opportunity to directly engage the Future Leaders in a small group setting. Patient Advocate questions to the Future Leaders have already influenced the selection of antibodies for spatial mapping in WP4 (Lundberg). After each interaction, the Patient Advocates complete an evaluation form to rate the understandability of the meeting content,  to generate a list of vocabulary, to provide a self-assessment of the Advocates’ level of comfort asking a question during the meeting; and to give feedback and recommendations to help the presenter improve their ability to communicate deeply basic research for everyday audiences. At the Plenary talk for the 2023 Summit, Sir David Lane highlighted the importance of global, interdisciplinary team collaboration and the power of this approach when it works. In collaboration with the biologists, epidemiologists and geneticists, the Patient Advocates are a critical component in the success of this interdisciplinary team collaboration. Active inclusion of Patient Advocates concerns into the research agenda on team PROMINENT will bring the highest ideal of participatory research and the cancer grand challenges to life.