Today’s cancer patients desperately want access to faster and better treatment options, but despite success stories and great potential, the actual use of diagnostic tests and increased data about individuals to tailor their treatment is amazingly low. Barriers (especially in clinical processes and payment) stand in the way of the rapid adoption that is needed. The path to more rapid adoption is through activated patients and startups trying to hack health care.
In this article, I explore the paucity of people who are currently getting tests that will help personalize their treatment, and suggest ways that we can all accelerate innovation in cancer treatment.
You can see the full article here.
Here is my call to action:
Activated Patients and Startups Can Create the Needed Breakthroughs
To achieve the faster, more disruptive breakthroughs that the system desperately needs, I believe that cancer patients should take a more active role in their own care. They (and their close caregivers) need to educate themselves and advocate for themselves. Physicians can help. Below is what I recommend to anyone who wants to accelerate the needed disruption of cancer treatment and what I’m doing:
Educate yourself about your disease, treatment options, and startups that are disrupting the status quo.
Cancer patients should find out about the possibilities associated with predictive diagnostic tests and targeted therapies, including joining online patient communities, getting second opinions (including exploring access to clinical trials) and finding a “patient advocate.” And they should find and take advantage of innovative industry disruptors. As in the cases of Amazon in retail, Uber in taxi driving, or AirBnB in hotels, the “barbarians at the gates” offer breakthrough services directly to consumers
For example, I’ve joined the Leukemia and Lymphoma Society and compiled maps of startups in each of ten “jobs to be done” for cancer patients.
Consider asking your doctor about clinical trials that you could join. Be part of a cohort in a trial to determine the efficacy of a drug with breakthrough status, especially if no treatment is currently available.
Become an advocate: Insist that you and every cancer patient must be treated with the best available knowledge.
Every patient is empowered to ask questions and insist that his/her treatment includes the best appropriate tests and therapies currently available (“n of 1”). Patients should be tracked to follow the course of their response (a “perpetual trial”). The real-world data from these personalized experiments should become the basis for continuous learning to prioritize the most promising therapies and slash the time and cost of developing drugs and testing clinical hypotheses.
Patient advocacy groups can help channel this advocacy. Cancer patients need to join groups that will advocate for getting their best personalized treatments now (e.g., drugs chosen because they match their molecular and genetic profile – “genotype”, rather than where their cancer appeared – “phenotype”). For example, the pancreatic cancer advocacy group PanCAN’s “Know Your Tumor” effort has shown10that a comprehensive precision medicine system can be implemented in community and academic settings, with highly actionable findings observed in over 25 percent of pancreatic cancers. And in a recent study11 of patients with previously treated metastatic cancers, all had genomic sequencing of their tumors, and almost half got a personalized combination of drugs.
- Turn your advocacy into action by being an early adopter of new apps and services, especially from startups, to help the revolutionaries. For example,
- I’m getting my blood and microbiome analyzed by startups (Natera and Viome).
- I signed up years ago for genetic analysis (23andme) and take their surveys.
- I’m going to put my health data into a personal data repository offered by a startup (MyCancerDB).
- I joined a health research project and donated my health data and specimens (All of Us).
- Help startups that offer disruptive services directly to consumers.
- For example, I’m a founding member of a startup that is offering cancer services directly to consumers (MyCancerDB).
- I’m seeing how I can help publicize companies that offer online advice (“second opinions”), such as Cancer Commons.
Some powerful messages that can potentially improve outcomes and save lives.
Excellent article! You bring up great points and stats, which unfortunately haven’t changed much at all over time.
Contrast that with the call to arms to combat COVID-19. Researchers gaining access to free genetic sequencing resources, while cancer researchers and patients may struggle to find the resources to pay for the same resource. And that is for a disease which has a much higher likelihood of ending their lives.
I wonder, perhaps our mind set about combating cancer has become too complacent because it has been with us for so long, we accept that there will be a lot of deaths, and assume plenty of people are doing research. We believe there must be adequate treatments since chemo and radiation have been around for so long. It’s a similar mindset to the flu: 50,000 people can die of it in a bad flu season in the US, but nothing shuts down, no special research is enacted, no call to arms.
Thanks for your efforts! Joe
I’ve heard a similar sentiment from other cancer patients.
A “silver lining” to the death and destruction that COVID-19 has unleashed includes a greater focus for everyone on public health and important lessons for patients and caregivers, particularly for those of us living with cancer. It has accelerated some positive changes that were underway that we should recognize and take advantage of. We should religiously follow guidelines for safe and healthy behaviors that strengthen our immune systems and make sure we are well prepared for our next unexpected crisis. Then, armed with this knowledge of our best treatment options, we need to be ready to fight for what is best for us.
This is a a very well informed and well written paper from a cancer patient who is deeply involved in researching his treatment options.
I commend Brad’s efforts to educate patients and empower them to be more involved in making treatment decisions. And the ways to do this are listed in this paper and Brad’s website!
I had to ask my doctors about Proton radiation otherwise they would have put me on the very damaging conveyor belt of regular radiation (available at their facility while proton was not offered there). After much research and meetings and Apts and consults I ended up a facility out of state to get it done. Had I not known to ask and followed up the damage to my heart, lungs, trachea, thyroid and breasts would have been much worse. When I landed back at DFCI for a follow up with one of the doctors for the chemotherapy they had given me six months prior I was told that few patients are as proactive as I was regarding my care and that, as such, I was one of their success stories. The sad stat is only 25% of the patients who walk in to DFCI walk out. Meaning survive. I was stunned when the doctor told me these. The message of your web site is critical. I just wish other newly diagnosed patients better understood the risk of complacency as it relates to their treatment. And wonder how you change that behavior?