Brad Power is a cancer survivor, specifically lymphoma, diagnosed in 2018. Since his diagnosis, he has been a particularly engaged patient, advocating for himself to ensure he could make the best possible treatment decisions. Now, through Cancer Patient Lab—an organization he co-founded—he helps other patients do the same. Here, our Curious Dr. George asks Brad about this work.
Curious Dr. George: How did the idea for Cancer Patient Lab come about?
Brad Power: I have had three epiphanies on my cancer journey. First, while attending a meeting of the Personalized Medicine Coalition at Harvard Medical School while I was being treated with chemotherapy, I stood up to share the difficulty I faced in getting my tumor tissue sequenced at an institution that professed to sequence all of its patients. People told me afterward, “You have a voice.” It felt like a calling.
My second epiphany occurred when my friend Bryce Olson told me that he had “hit a wall” with his own cancer treatment and had no good treatment options for his advanced prostate cancer. I said, “We can run a hackathon [a crowd convened virtually] to help you make your next treatment decision. Bryce said, “Let’s do it.”
Then, I ran hackathons for two other cancer patients. They worked well for the individuals, but it was very expensive to convene a crowd of 50 to 100 people for one patient over several months. Seeing the need for patients to be more involved in their own cancer, I had my third epiphany: to co-found Cancer Patient Lab, a learning community to enable cancer patients and caregivers to actively participate as co-pilots with their medical team in their testing and treatment decisions.
Curious Dr. George: What are the main purposes of Cancer Patient Lab, and how do you attempt to achieve them?
Brad Power: We believe that engaged patients get better outcomes. We want to help patients and caregivers who want to participate as full partners with their medical team raise their level of education and understanding to weigh in on the tradeoffs in their testing and treatment decisions. Our focus is on complex decisions beyond the standard of care. We strive to fix these breakdowns in cancer care:
- People don’t shop for care, but they should.
- Care is not personalized, but it should be.
- Advanced medical innovations are not included in clinical decisions, but they should be.
Curious Dr. George: What products and services do you offer?
Brad Power: Our main service and engine of information for our community members is our weekly webinar series. We have three main types of conversations:
- Diagnostic companies, which describe their cutting edge tests, such as transcriptomics, proteomics, liquid biopsies, and functional testing – so that patients and caregivers can ask their medical team, “Should I get this test to inform my treatment?”
- Leading MD/PhD researchers who share with patients the newly approved therapies in the last six months, and likely to be approved in the next six months – so that patients and caregivers can ask their medical team, “Should I consider this treatment?”
- Rogue patients, who share their journeys and how their advocacy for themselves led to better outcomes – so that patients and caregivers can see, “That’s what a citizen scientist looks like.”
We are building a chatbot which will enable people to access this content without watching the webinars. In addition, we are building our social media presence to make cancer patients and caregivers aware of our content. We also collaborate closely with a number of organizations whose goals align with ours, including Cancer Commons.
Curious Dr. George: How many people have used these products and services?
Brad Power: We have over 400 members on our discussion hub, over 1000 subscribers on our YouTube channel, over 500 subscribers to our LinkedIn group, and growing presences on Facebook, Instagram, and Reddit.
Curious Dr. George: How do you measure success?
Brad Power: Our objective is to have a positive impact on patients and caregivers by giving them information to help them get the best personalized outcomes from their care.
Visit Cancer Patient Lab to learn more. Brad can be reached at bradpower@cancerpatientlab.org.
Related links:
- How to Advocate for Yourself: Advice from an Empowered Lymphoma Patient
- The Personalized Power of the “N-of-1” Approach
- Cancer Commons’ Services for Patients and Caregivers
A message from Curious Dr. George:
The goal of Cancer Commons is to help patients identify and access their best possible treatments, one patient at a time, while moving the field forward. If you have advanced cancer, let our molecular oncology scientists provide personalized information about your options.
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Copyright: This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
