Bryce Olson's Hackathon
Headline: An Extraordinary Group of Cancer Researchers, Diagnosticians, Patients, Scientists, and Physicians Collaborated to Find a Life-Extending Therapy for One Patient
Purpose: This page offers an introduction into the Bryce Olson Collaborative effort which ran from December 23, 2020, to March 11, 2021. For additional details, read the full case study here (Google doc).
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.
Bryce Oson is a 50-year-old Portland-based tech executive with Intel Corporation, a single dad of a 12-year old girl, a surfer, musician, and an internationally known patient advocate for genomics-guided precision medicine with deep connections in the industry. Bryce is an articulate, well-known metastatic prostate cancer patient, who has been featured in WIRED, the Washington Post, and ABC News in San Diego. He speaks regularly at conferences on the power of genomics to guide personalized treatments. He has a website, Sequenceme.org. His graciousness and charisma attract friends who want to help him. Each line of therapy has knocked down his cancer, but each time it has come back. Bryce’s situation was profiled in an article in WIRED: One Man’s Search for the DNA Data That Could Save His Life.
In early December 2020, Bryce Olson told his friend Brad Power that after seven years and eight rounds of therapy for his metastatic prostate cancer, Bryce had hit a wall and feared that he had run out of treatments that had a chance of knocking down his cancer.
As cancer patients like Bryce try more and more lines of therapy, they look less and less like other patients, and they get farther away from treatments that have solid evidence to support them.
In early January 2021, the urgency for finding a solution increased as Bryce’s prostate-specific antigen (PSA) test (a measure of the activity of the prostate cancer) spiked up. By mid-January he also presented with radiographical progression as measured by novel (“PSMA-PET”) scans at UCLA along with conventional imaging at UCSD – all indicating that his cancer was being more aggressive.
As cancer patients like Bryce try more and more lines of therapy, they look less and less like other patients, and they get farther away from treatments that have solid evidence to support them. Brad suggested that they could organize a hackathon – a collective effort to find out what was driving Bryce’s cancer and stop it.
By engaging a broad community of experts with diverse experience, they hoped to identify new molecular drivers and biomarkers along with treatment options that could complement ideas from Bryce’s extremely talented oncologist, Dr. Rana McKay at UCSD.
With the help of Pete Kane of Research to the People and Stanford University, on December 24, 2020 (in the week before Christmas), they launched a collaborative effort to find the best treatment for Bryce. Pete shared his experience in running weekend hackathons on patient-focused research cases leveraging medical records, whole genome sequencing, -omics and a range of other data types. They invited over 100 leading researchers, doctors, bioinformaticians, and patients, including a dozen leading analytics companies and five prostate cancer experts to form a medical advisory panel (a “virtual molecular tumor board”).
Their goal: Get Bryce his next treatment in a couple months — by the end of February.
Weekly lightning updates were held on Zoom, recorded, and posted on YouTube. (You can see all the meeting recordings at https://www.youtube.com/channel/UCtgJJLJ2Vi91aUnU6ZP8dYQ). A Slack workspace was established for ongoing online conversations and as a system of record.
Bryce put his extensive medical data and reports in a cloud repository and permissioned access to anyone who wanted to review it. (See below for details.)
On January 12, 2021, a virtual molecular tumor board met with Bryce and debated a half dozen treatment options. The options targeted different genetic variants or pathways, which had been derived from an analysis of Bryce’s tumor tissue. Other options were built on molecular signatures hypothesized to be active and would need to be proven.
- 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 given permission access to scientists and researchers who run algorithms and conduct analysis on top of this data.
The collaborative effort achieved its goal to help Bryce and his medical team decide on his best next treatment. The PSMA-targeted radionuclide therapy which was chosen was not on Bryce’s list of treatment options going into the hackathon. The main benefit of the hackathon to Bryce and his medical team was greater confidence in that selection, and the consideration and upgrading or downgrading of other options, which may be useful if a next round of treatment is needed.
To Bryce and his lead oncologist Rana McKay, the benefits were:
Energy: Dozens of researchers, scientists, patient advocates, and doctors came together to bend the healthcare system for one individual. It felt inspiring and spawned innovation and momentum in the group.
Insights: The radionuclide Bryce is going to get was not on his radar when he entered the hackathon. That it emerged as the number one choice was groundbreaking for him. Other new options, such as the EZH2 inhibitor and antigen-receptor protein degraders, were also identified. While some options, like a Pi3K inhibitor, would not work as well if it would be affected by another element in his genomic profile (PTEN loss). The cross-institutional virtual molecular tumor board was particularly valuable and efficient in arriving at a prioritized list for someone like Bryce who has hit a wall and is running out of options. The insights that were driven will be valuable for many others.
Connections: While Bryce was connected to lots of people going in, the hackathon process generated an exponential increase in participants. For example, Dr. Oliver Sartor from Tulane, who was key in connecting Bryce with Weill Cornell to get access to the PSMA-targeted radionuclide therapy, joined through a friend of Brad’s. Dr. Sumit Subhudi from MD Anderson, who is an expert in advanced aggressive prostate cancer and made major contributions to therapies to consider and prioritize, joined through a referral from a referral that Brad found. Amazing insights came through prostate cancer patient experts who were members of AnCan. Bryce became a loyal member of that group because of their knowledge of cutting edge therapies.
If you participate in our Hackathons you should expect a culture of open participation, open data, and open results. You will be welcome to join weekly lightning update calls and an online discussion forum.
If you have analytical tools, you are encouraged to apply them and share your analysis. If you have specialist knowledge, you may participate in smaller discussions or in the molecular tumor board.
Cancer-specific patients, pathologists, scientists, researchers, medical professionals, bioinformaticians, and oncologists with intermediate to advanced experience who would like to help are welcome to participate.
By participating in a CancerLab Hackathon, you will have the opportunity to contribute to a cure for cancer patients who have hit a wall, network with top influencers in the digital health and innovation community, and participate in cutting edge data analysis and therapy recommendations.
Latest News about Bryce
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,
In Pioneering Effort to Align Health Care System With Patient Needs, Collaborators Come Together to Crowdsource Ways to Improve Care for Patient Advocate Bryce Olson
In a pioneering effort to align the health care system with the needs of an individual patient, Bradford Power, a patient leader on the steering committee for