Purpose: This document captures the story and lessons learned from the Bryce Olson Collaborative effort which ran from December 23, 2020, to March 11, 2021, as a record for future reference.
Headline: An Extraordinary Group of Cancer Researchers, Diagnosticians, Patients, Scientists, and Physicians Collaborated to Find a Life-Extending Therapy for One Patient
Summary: Fearing he was running out of time to find a viable treatment option for his advanced prostate cancer, Bryce Olson used a novel crowd approach to find his next round of treatment.
What Was Distinctive about This Collaborative Effort
- Crowdsourcing: The Bryce Olson collaborative effort was an open forum with open data and open results, leveraging an online crowd of the smartest cancer researchers, doctors, bioinformaticians, and diagnostic experts. It was an unprecedented convergence of energy between cutting-edge data from one of the most analyzed people ever, analysts, and researchers with the latest treatment options. The large crowd helped surface up findings that would not have been possible otherwise, and increased confidence in selecting among the treatment options. For example, research oncologist Dr. Sumit Subhudi of MD Anderson volunteered to help, saw that Bryce has aggressive variant prostate cancer, and pointed Bryce to two clinical trials built for someone with his genomics. Research oncologist Dr. Oliver Sartor reinforced recommendations for a novel treatment using radioactive particles and helped Bryce access the leaders of its only U.S. clinical trial. Experts at Tailor Bio saw evidence of chromosomal instability and inferred that Bryce could be sensitive to PARP inhibition, but others with treatment and outcome databases haven’t been able to clinically validate this, so it’s no longer on his list of treatment options.
- Collapsing silos for better outcomes: Bryce reached into cancer research labs, diagnostic companies, and biotech startups to engage the greatest minds in his case. In a health system power structure usually weighted to drug discovery by pharmaceutical companies and academic researchers, there are many layers between researchers working in labs and patients. Bryce collapsed these layers as he connected directly to researchers and other experts to find viable, evidence-based treatments and novel clinical trials. Researchers and bioinformaticians love to help and see their best ideas put into practice to save a life.
- Patient leadership: Bryce is a role model of a patient who is actively engaged in his treatment decisions, working with the leading labs to be molecularly profiled, driving the deep analysis of his data with diagnostics experts and his medical advisors, and being knowledgeable and able to fully engage in tradeoff decisions. Bryce is showing what can be gained by weighing in on what he wants among his treatment options, weighing risk, evidence, and potential returns. Bryce also controls his data. He has copies of all of his molecular profiling data and reports, and has permissioned access to scientists and researchers who run algorithms and conduct analysis on top of this data.
For the full case study, click here.
Awesome summary, inspiring effort and thanks for your magnanimous leadership.