For cancer patients nearing the end of standard of care treatment, data gleaned from their tumor genome and tissue samples can be an invaluable resource for seeking out future care. But how do patients safely access these data and obtain analyses to guide future personalized care? A unique study pairing researchers from the Translational Genomics Research Institute (TGen), part of City of Hope, with one cancer patient is now underway to help answer that question. Rick Stanton, a former engineer and advanced prostate cancer patient, is at the center of TGen’s Patient Engagements, Operational Practices, and Laboratory Environment Standardization (PEOPLES) protocol.

The protocol, led by TGen’s Nicholas Schork, Ph.D., along with Laura Goetz, M.D., M.P.H. and Edward Kalpas, M.D., M.P.H., is designed to help Stanton aggregate his personal cancer assay data and perform subsequent analyses that could lead to a treatment that will save his life. Schork and colleagues want the protocol to offer a safe path for more patients who want to take control of their data. 

“For many people who are in the later stages of their cancer, the treatment guidelines no longer apply,” said Schork. “Our motivation for this study was thinking about what data we could bring to the table to help the patients and interested physicians make decisions about the next steps.”

The data could help as patients consult with their physicians about new treatments or ongoing clinical trials that might test relevant drugs, or be used in open cancer ‘hackathons’ where groups of researchers sift through a patient’s data for possible treatment options. 

“Our protocol is not meant to be a substitute for anything physicians are working on with their patients,” Schork said, “but hopefully the data can help patients feel more empowered as they go through this very complicated and life-threatening process.”

There is existing legislation, FDA programs like the Expanded Access Program, and a growing general interest in a “right to try” experimental therapies when all else fails that advocates for patients seeking the use of experimental drugs for conditions not treatable by current drugs “and we think of the protocol as a very low level version of this. Why can’t patients at least look at the more basic data arising from various assays that have been run on them?” he added. “If we’re OK with people trying drugs at end of life, we should at the very least be OK with them trying to explore their data for information that may help lead to a drug.”

“Physicians can feel threatened when patients want to explore experimental testing strategies, because they (the physicians) often don’t know how to order, let alone interpret, such tests. Dr. Kalpas and I want to encourage our colleagues to embrace such efforts and see the PEOPLE’s protocol as a first step in normalizing this process for medical professionals,” Goetz said.

Read more on tgen.org

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