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Activating Patients: The Path to Personalizing Cancer Treatment

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.

  1. Turn your advocacy into action by being an early adopter of new apps and services, especially from startups, to help the revolutionaries. For example,

  2. I’m getting my blood and microbiome analyzed by startups (Natera and Viome).

  3. I signed up years ago for genetic analysis (23andme) and take their surveys.

  4. I’m going to put my health data into a personal data repository offered by a startup (MyCancerDB).

  5. I joined a health research project and donated my health data and specimens (All of Us).

  6. Help startups that offer disruptive services directly to consumers.

  7. For example, I’m a founding member of a startup that is offering cancer services directly to consumers (MyCancerDB).

  8. I’m seeing how I can help publicize companies that offer online advice (“second opinions”), such as Cancer Commons.

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