“A Rogue Cancer Patient Gets Better Outcomes”
Featuring: Ari Akerstein
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Ari Akerstein
“A Rogue Cancer Patient Gets Better Outcomes” (Ari Akerstein) [#109] Ari Akerstein and Brad Power August 14, 2024 “A crisis is a terrible thing to waste.” – Winston Churchill “It became clear to me that I was going to be fighting this system, just from that very first entry point.” – Ari Akerstein “I felt the burden of ownership for caring for my own health.
In a way, it was a little bit like what I do at work day-to-day.” – Ari Akerstein “There's two parts: How do you do it on the bleeding edge, to push the standard of care as far as can be, and then how do you bring up the base and give that to the broadest set of people in an automated platform delivery fashion?
” – Ari Akerstein Meeting Summary In 2018 Ari Akerstein, a software Product Manager in Silicon Valley (at places like Facebook/Meta and @Walmartlabs, IncludedHealth), was diagnosed with an aggressive blood cancer (Diffuse Large B-cell Lymphoma, DLBCL), which can be lethal within 6-12 months.
Over the course of several months he had to go from being the healthy dad of three young kids to navigating his healthcare decisions and making complex treatment decisions. Many patients who are diagnosed face a similar “bolt out of the blue”. Some react with denial that there is a problem. Some trust their care to their doctors and the medical system.
A rare few engage actively in their care decisions. Ari is a leading example and role model for the engaged patient. He took an aggressive "rogue" approach to navigate his care, leveraging the problem-solving approaches he had learned as an entrepreneur and product builder.
Attitudes, Behaviors, Strategy ●Questioning, challenging, thinking for himself, from the bottom up, from first principles, about what was happening, combined with a distrust of the medical system; diving deep into the details to understand his disease, reading the research papers and not being scared of the jargon; bridging between molecular biology, molecular pathology, and clinical oncology ●Finding treatments he didn't like, and being scrappy and inventing one (e.
g.
“A Rogue Cancer Patient Gets Better Outcomes” (Ari Akerstein) [#109] ●Developing and implementing deliberate decision-making frameworks to navigate his care and drive better outcomes for himself, such as the distinction between “two-way doors” (reversible decisions which you can make quickly) and “one-way doors” (most medical decisions, which are irreversible) ●Leveraging his friend and expert network to help him make decisions, especially “smart generalists” – people who don’t know anything about healthcare, but they make a lot of decisions under uncertainty, and have a track record of doing that well ●Getting the right treating physician, including pulling through a physician social network
to help him make decisions, especially “smart generalists” – people who don’t know anything about healthcare, but they make a lot of decisions under uncertainty, and have a track record of doing that well ●Getting the right treating physician, including pulling through a physician social network and shifting from an excellent community hospital setting to an academic research cancer center ●Finding his therapy, including pushing back on recommendations, in some cases from the leading institutions/Centers of Excellence, by doing research and getting “second opinions” Tips, Tricks, Hacks ●Converting hard things, like getting chemotherapy, into events ●Sending out an email to everybody in his network, then launching a blog ●Ensuring that the surgeon collected extra tissue from a biopsy to be able to run more tests ●Pushing to get more diagnostic tests, e.
g., liquid biopsies What were the results of his approach?
●Complete remission ●Avoided stem cell transplant OR Clinical Trial OR more chemotherapy - all were recommendations from leading doctors at academic centers ●Modified a surgical protocol in collaboration with his surgeon, resulting in a much less invasive approach ●Made beautiful connections and memories ●Top fundraiser for the Leukemia and Lymphoma Society in the San Francisco Bay area post treatment due to sharing his story widely How is Ari sharing what he learned?
●Compiled his journey into an ebook - (free) download at Chemolog ●Blogging at Rogue Patient https://ariakerstein.substack.com/ ●Building the CancerHacker Lab/Accelerator ●Developing a company to help with diagnostics navigation ●Consulting informally to cancer patients What can you learn from Ari’s story? ●Active/empowered patients get better results. ●You have more agency than you think.
●Many of the industry's problems are man-made and result from system failures. ●Discover frameworks anyone can use to become a more deliberate decision-maker. What can you do to learn more?
“A Rogue Cancer Patient Gets Better Outcomes” (Ari Akerstein) [#109] ●See other examples of engaged patients, such as Mark Taylor, Robb Owen, and Brian McCloskey. ●Join the discussion at our Cancer Patient Lab discussion hub here. ●Read Ari’s blog at Rogue Patient https://ariakerstein.substack.
com/ The information and opinions expressed on this website or platform, or during discussions and presentations (both verbal and written) are not intended as health care recommendations or medical advice by Cancer Patient Lab, its principals, presenters, participants, or representatives for any medical treatment, product, or course of action.
You should always consult a doctor about your specific situation before pursuing any health care program, treatment, product or other course of action that might affect your health.
“A Rogue Cancer Patient Gets Better Outcomes” (Ari Akerstein) [#109] Meeting Notes KEYWORDS
, or course of action. You should always consult a doctor about your specific situation before pursuing any health care program, treatment, product or other course of action that might affect your health.
“A Rogue Cancer Patient Gets Better Outcomes” (Ari Akerstein) [#109] Meeting Notes KEYWORDS people, decisions, brad, pathology report, outcomes, ari, question, kaiser, felt, oncologist, work, clinical trial, ucsf, care, bit, ended, diagnostics, system, doctor, patients SPEAKERS Ari Akerstein (70%), Brad Power (9%), Chris Apfel (7%), Allen Morris (7%), Rick Davis (3%), Bill Paseman (2%), Brian McCloskey (1%), Roger Royse (1%) CHAT CONTRIBUTORS Allen Morris, Alexander Lalov, Ryan Moon, Rick Davis, Noel Resch SUMMARY The conversation revolved around Ari Akerstein’s personal experiences with cancer diagnosis and treatment, with a focus on the importance of patient-led communities and personalized medicine.
Ari shared his experience with non-Hodgkin's lymphoma and the lessons he learned. The speakers discussed challenges and opportunities in scaling innovation in healthcare, emphasizing the need for navigation and integration of multiple tests and interventions from a patient's perspective.
They also highlighted the importance of informed and engaged patients in achieving better outcomes, and the potential solutions for implementing personalized medicine in clinical practice. OUTLINE Ari Akerstein introduction and his story in navigating the healthcare system. ●Ari Akerstein shares his experience with aggressive blood cancer and lessons learned.
●He was diagnosed with non-Hodgkin's lymphoma. ●A nurse navigator at Kaiser Permanente scheduled his chemotherapy session without properly orienting him. ●His initial reaction to his cancer diagnosis was feeling resigned but determined to fight the system. ●He prioritized keeping his network updated on his health journey, sending an uncomfortable email to his contacts.
Managing health crises through email updates, blogging, and a positive attitude. ●Ari Akerstein received support from friends and strangers after sharing his cancer diagnosis through email updates and a blog. ●The support he received helped him process his thoughts, make difficult decisions, and feel motivated by the goodness coming from the universe.
“A Rogue Cancer Patient Gets Better Outcomes” (Ari Akerstein) [#109] ●He focused on mental game, positive attitude, and decision-making during cancer treatment. ●He drew a napkin sketch to help him approach decisions intentionally and deliberately. Decision-making strategies for cancer treatment.
●Ari Akerstein reflects on his family's medical history and the importance of making informed decisions when facing cancer diagnosis. Some decisions are “one-way doors,” some are “two-way doors”. ●He uses a pyramid analogy to describe how he triangulated information from various sources, including oncologists and trusted friends, to make decisions.
y and the importance of making informed decisions when facing cancer diagnosis. Some decisions are “one-way doors,” some are “two-way doors”. ●He uses a pyramid analogy to describe how he triangulated information from various sources, including oncologists and trusted friends, to make decisions. ●He sought advice from "smart generalists" to help make medical decisions.
●He used a decision tree to evaluate potential outcomes of treatment and work. He considered the role of regret in checking decisions he made. Cancer treatment options and surgeon selection. ●Ari Akerstein struggled with self-injections and found ways to cope with the treatment.
●He flipped his chemotherapy experience into a series of memorable events, inviting friends and colleagues to join him and creating a window into the process for them. ●He negotiated with a surgeon and found a laparoscopic option (with an open surgery path), reducing risk and improving recovery.
●He sought a better treatment approach after a biopsy revealed residual cancer activity after completing first-line treatment. Cancer treatment options with conflicting opinions from doctors. ●He sought second opinions (4 total) on his pathology report after doubts raised by doctors.
One of the keys to his successful outcome was getting new data: he had a lab run another pathology report on the same biopsy tissue as the original lab. ●He sought advice from smart laypeople and experts on treatment options for his rare blood disorder. The key was laying out the situation and assessing areas of converging vs. diverging perspectives.
Cancer treatment options and lifestyle changes. ●Ari Akerstein emphasizes the importance of getting a second opinion (sometimes multiple such opinions), and using a deliberate decision-making process when faced with a medical diagnosis. ●He suspected misinterpretation of pathology results due to differences in opinion among pathologists.
●He shares his experience with a pescatarian diet and exercise, noting the intentionality of his lifestyle changes, and that it’s impossible to attribute positive results to these changes. For example, he questions the effectiveness of green tea steeping for more than 10 minutes, citing scant evidence but acknowledging a possible placebo effect.
●He built up his strength, understanding the cumulative damage multiple rounds of chemotherapy would incur on his body. Kaiser Permanente's healthcare quality and accessibility.
“A Rogue Cancer Patient Gets Better Outcomes” (Ari Akerstein) [#109] ●Kaiser Permanente's flexibility and convenience may come with limitations in care quality. ●Ari Akerstein and Rick Davis share experiences of being blocked and sabotaged by medical professionals. ●Akerstein found a way to get access to treatment through a former colleague at Stanford. Using technology to improve healthcare outcomes. ●Ari Akerstein shares his unconventional background in fitness and product management,
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