Guest Post by Brad Power
I am a ‘process innovator’—for years I’ve worked to identify where changes are needed and then successfully streamline company operations through change to make those organizations even more successful.
In 2018, cancer sought to interrupt my career, as I was diagnosed with lymphoma. I started a course of chemotherapy; thankfully, it went well. Today, I have no evidence of the disease—I feel great.
During my cancer journey, I faced challenges that I later recognized are common among people diagnosed with cancer.
Always the analyst, I discovered—during my cancer journey—that engaged patients who pursue personalized care get better outcomes.
So, I decided to apply my experience in process innovation to accelerate the engagement and empowerment of patients in how they can learn from each other, and to support them to actively partner with their healthcare professionals. That looks like shifting from being passengers to responsible co-pilots of their own care, especially for those who are going “off road” (outside the standard care guidelines).
After my cancer diagnosis, I decided to learn as much as I could about cancer and then share my insights. I got many recommendations, including for a book, n of 1, written by a leukemia patient, Glenn Sabin, and Dr. Dawn Lemanne. I was inspired by Glenn’s active engagement in making decisions about his disease and his push to exercise as much as he could during his treatment.
I reached out to Glenn and many others to learn more. Over time, we’ve become good friends and collaborators in helping patients engage in their personalized care.
Later, at a conference on personalized medicine at Harvard Medical School, I spoke up to provide my experience as a patient, and was told by numerous attendees during the breaks that I had a voice. I felt this must be my calling—focus my skills and experience on accelerating initiatives related to innovation in cancer treatment.
Creating a Cancer Hackathon Platform
Because of my experience in working with large, successful companies, I was skeptical that incumbents would drive the big, disruptive process changes as fast as patients need. I decided to do what I could, which was (1) to engage advanced cancer patients who actively involved themselves in solving their problems, and make them available to others, and (2) to assist startup companies that are disrupting the health system to provide patients education, help them navigate their journey, and invite them to form community.
Here’s how it all came together and how it works:
In late 2020 I was talking to my friend Bryce Olson, an advanced prostate cancer patient who said he had hit a wall in keeping his cancer at bay. I suggested to Bryce that we could run a “hackathon”—a collaborative effort of a diverse crowd of experts—for him to find his best next treatment option, which we did from December 2020 to March 2021.
I then hosted two hackathons: one for Linnea Olson, a lung cancer patient, and another for Kasey Altman, a young woman with a rare cancer.
To grow the learning in the hackathons, in March 2022 I launched Prostate Cancer Lab with two advanced prostate cancer patients to help them, and other patients, to make complex testing and treatment decisions, to learn, and to accelerate innovation. Going forward, I hope to make hackathons available to many more patients who are facing complex testing and treatment decisions.
Patient communities and hackathons can aid patients, their caregivers, and medical teams identify and consider additional, more personalized testing and treatments for better cancer outcomes.
The Problem: Complex Personalized Testing and Treatment Decision-making
At the time of writing, over 600,000 people in the United States have advanced (metastatic) cancer for the most common cancer types (breast, prostate, lung, colorectal, bladder cancer, metastatic melanoma). That number is expected to increase to almost 700,000 by 2025.
These advanced cancer patients, their caregivers, and their medical teams face complex testing and treatment decisions. Some patients are able to go the route of the standard treatment for their cancer, or a treatment targeted at a unique mutation in their cancer. Mutations can be identified through a standard DNA sequencing test which can point to potential treatments. But not everyone gets it—too often because of lack of access—and, even for those who do, it’s often not enough. For many, there comes a point, especially once the initial treatments are exhausted, when cancer survivors can run out of viable options—they need to be able to look/choose elsewhere.
The Solution: Guidance from a Community of Fellow Patients
It must be repeated: patients who are actively engaged in their care are more likely to realize better outcomes. To engage in their care, they need specific, personalized information about testing and treatment options, which can come from connection with a community of fellow patients, the connection sometimes being called a “hackathon”. That’s where people like me can come in.
Consider these real-life community examples:
- A patient with an aggressive cancer was running out of treatment options. He learned about proteomics, a cutting-edge analysis of cancer expression, and a proteomics service provider (mProbe), from his participation in the Prostate Cancer Lab. He decided to pursue their test. The proteomic analysis of his tumor identified a new mutation which could be targeted by a chemotherapy which was normally used for lung cancer. It provided him another treatment option.
- A line of treatment failed for an advanced prostate cancer patient. His PSA was climbing fast. While he waited for his next therapy to become available, he needed a drug to keep his cancer under control. A patient in the Prostate Cancer Lab community suggested he try another hormone blocking therapy. His doctors were doubtful he’d respond, since he had failed to respond to one of the other androgen deprivation drugs. He took the drug anyway, and it not only stopped the progression of his cancer, but it lowered his PSA, indicating a decline in the aggressiveness of his cancer.
- A cancer patient searching for more treatment options was advised to analyze his RNA, to find additional drug targets, by one of the patients in the Prostate Cancer Lab who is a bioinformatician. The patient’s treating oncologist was skeptical that the RNA sequencing would be useful. He decided to get the test done anyway, and it identified an abnormal mutation (B7H3) for which there is a targeted treatment. His doctor was happy to add it to his short list of treatment options.
There is so much more to be learned and so much more healing to take place: the point is that, because of the innovative gathering of information, a patient was fortunate to survive for over 8 years through 8 lines of treatment; at that point—having exhausted all the treatments that targeted his mutations—RNA sequencing or proteomics could identify additional biomarkers as drug targets.
Lessons Learned: How Communities (and “Hackathons”) Are Helping Patients and their Caregivers
Building on the testing and treatment options and experts identified in the hackathons I had run, two advanced prostate cancer patients, Brian McCloskey and Rick Stanton, and I designed the Prostate Cancer Lab, which we launched in March of 2022. We help advanced prostate cancer patients navigate complex testing and treatment decisions. Our services include:
- A Testing and Treatment Pipeline: All patients who join the community are guided to testing services to get whole genome DNA sequencing, RNA sequencing, proteomics, and liquid biopsies to identify their unique biomarkers (typically three to five are identified) and then to several treatment matching services (typically a dozen to two dozen treatments are identified).
- Education: Patients and their caregivers are invited to join weekly online webinars with experts in diverse fields, including physicians, researchers, scientists, diagnosticians, bioinformaticians, and modelers. Industry innovators often discuss their services and benefits, with focus on advanced functional assays that can inform treatment decisions. Many of these webinars lead to patients signing up for the services.
- Hackathons: Some of the meetings focus on one patient who shares their situation and solicits guidance on testing and treatment options and strategic choices.
- Community: An online software platform allows patients to ask questions and share news with the community, mostly peer patients and caregivers.
Engage in Your Care to Get Better Outcomes
If you get a cancer diagnosis, you need to actively engage in your treatment. Putting all your trust in the medical system—or avoiding the medical system—might have worked for you in the past, but it can be fatal with cancer. You cannot make informed, educated decisions about your care, or navigate your care treatment, unless you actively participate.
You need to personalize your treatment by gathering diagnostic data and identifying targeted treatments unique to you, advocate for access to the latest care options, and learn about and follow guidelines for a healthy lifestyle. Patient communities and hackathons can serve you on your journey.
Please check out and consider joining CancerHacker Lab.
About Brad Power
Brad Power is the founder of CancerHacker Lab, a co-founder of Prostate Cancer Lab, and a founding member of ennov1. He is an advisor to 4DPath, Alva10, Blue Note Therapeutics, Cancer Commons, Consuli, Dana-Farber Cancer Institute, Rabble Health, and Travera, and an active contributor to the Personalized Medicine Coalition. For several of the companies mentioned he receives direct financial compensation or otherwise holds an equity interest.
Photo courtesy of Brad Power
