If you get a cancer diagnosis you need to actively engage in your treatment, or else bad things can happen. 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. With a cancer diagnosis, it’s increasingly important that you understand the unique testing and treatments that are exploding and available to you, to participate in choosing the best treatment options for you, and to maximize the positive impact of behaviors only you control, such as diet, exercise, rest, attitude, and adherence to doctor’s orders. You cannot make informed, educated decisions about your care or navigate your care treatment, unless you actively participate. For example, your doctor may recommend an invasive treatment like surgery or chemotherapy, which are standard, when you have other, less invasive options, but are more experimental. 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.
Attack the Tumors
Strengthen the Defenses
| The Individual Comes With | Providers, Regulators Behavior | Pharma, Med Device Companies Behavior | Payers Behavior | |
|---|---|---|---|---|
| Goals | Solve my problem now | Do no harm: prove safety first, then efficacy; control the process | Maximize profits; protect proprietary innovations | Minimize costs; retain members |
| Method | Find patients like me: what has worked and hasn’t? “N of 1” trial, what’s best for me | Standard of care based on solid evidence -- randomized clinical trials (batch) | Invest in therapies that have the biggest market potential | Only reimburse for therapies with demonstrated results; realize long-term benefits for investments |
| Data | More is better; privacy, notify if new therapies | Proprietary, hoard | Proprietary, hoard | Proprietary, hoard |
| Effect | Fast, agile, continuous learning | Start with old, well known approach, decades to update standard of care | High prices for new therapies, potentially useful data not shared | Deny reimbursement for new treatments; avoid reimbursing for services with long-term paybacks |
| Risk | Seduced by new approaches without supporting scientific evidence; weak emotional base, finances, or education | Biased to avoid any bad patient outcomes (even if offset by many good patient outcomes) | High prices lead to government regulation | Denial of reimbursement for services that are less costly over the long term |
Patients are:
A segment of people (e.g., those facing a death sentence) are:
Samuel Johnson: “Depend upon it, sir, when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully.”
The current system isn’t fast and agile enough for people with a death sentence.
“Patients own their health data, which is more valuable if shared.” –Deven McGraw Meeting Summary Getting access to and controlling one’s medical records can increase
Meeting Summary “I want to use the biopsy of my tumor tissue to do a couple things: (1) to make sure that I get greater
Kasey Altman was invited to speak at the Milken Global Conference in May 2022, less than two months before she passed away. She was grateful
TGen Study Offers Path for Late-Stage Cancer Patients Wanting to Leverage their Own Health Data to Guide Their Care Read the full article here: https://www.tgen.org/news/2022/may/18/tgen-study-offers-path-for-late-stage-cancer-patients-wanting-to-leverage-their-own-health-data-to-guide-their-care/
The Harvard Medical School published an article and a very moving video about Linnea Olson. Check it out here: https://executiveeducation.hms.harvard.edu/linnea-olson-appreciation
In this episode, Libbi Rickenbacher of 4G Clinical’s Trial Trends podcast is joined by Brad Power, Founder of CancerHacker Lab, to discuss what can be done
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