Navigating a Cancer Diagnosis: Tools and Strategies for Patients
Featuring: Ari Akerstein and Brad Power
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Ari Akerstein and Brad Power
“Empowering Cancer Patients: Navigating the Complexities of Diagnosis and Care” (Ari Akerstein and Brad Power) [#130] Brad Power February 5, 2025 “Our thesis is that diagnostics are the key to getting the best outcomes. Another observation is that the diagnostic technologies are exploding in what's available today. Tissue analysis and scans are used.
DNA sequencing is still pretty low, but increasing. Things like liquid biopsies, functional testing, and RNA, are not utilized.
” – Ari Akerstein “The approach that we're taking is in thinking about what it would look like to design a system that's built around the patient, rather than having the patient contort to the medical system… Could you build a better thing that patients, in aggregate, are able to pull toward a better thing, whatever that ends up looking like, and bend the [access to innovation] curve that way?
” – Ari Akerstein “There's the report. There's that thing that's written down, and then there’s what does it mean? The one question on the mind of the patient is: Is this bad news? Should I be concerned, or is this good news, and I should not be concerned? The only way you get that, typically, is from talking to an expert who's seen a lot of cases to put it in context.
” – Brad Power “What are the characteristics if we were trying to design something that maximizes trust? Who do you trust? What do you trust? What does trust mean to you when you're getting test results when the confidence around them is not 100%, let's say, or the interpretation isn't. What does trust mean to you, and what is trustworthy?
” – Brad Power Meeting Summary For patients and their loved-ones, a cancer diagnosis can feel like being dropped into a war zone without a map. You are bombarded with complex medical terminology, an avalanche of information, and a fragmented healthcare system that often feels impersonal and overwhelming.
This can lead to feelings of helplessness and anxiety, hindering your ability to make informed decisions and actively participate in your care. Specific challenges include: ●High diagnostic errors : One estimate suggests at least 40,000 cancer patients die each year in the US as a result of misdiagnosis or delayed diagnosis.
●High variance in care : Academic centers and community clinics offer vastly divergent experiences for patients. Household income is a large predictor of the care one will receive.
●Missed opportunities to capitalize on emerging diagnostic technologies : While tissue analysis and scans are commonly used, and DNA sequencing is increasing, many doctors don't prescribe emerging technologies such as liquid biopsies, functional testing, transcriptomics (RNA sequencing), proteomics, and other newer tests, missing opportunities to guide treatment decisions.
●Disjointed patient experience : Even the most proactive and informed patients struggle to navigate the complexities of the healthcare system.
biopsies, functional testing, transcriptomics (RNA sequencing), proteomics, and other newer tests, missing opportunities to guide treatment decisions. ●Disjointed patient experience : Even the most proactive and informed patients struggle to navigate the complexities of the healthcare system.
“Empowering Cancer Patients: Navigating the Complexities of Diagnosis and Care” (Ari Akerstein and Brad Power) [#130] ●Inadequate personalized support : Cancer care is not one-size-fits-all. Each patient's needs, values, and treatment goals are unique.
You deserve a healthcare system that recognizes and supports your individuality, providing tailored guidance and resources to empower you throughout your cancer journey.
Solution: Empowering Patients with Diagnostics, Community, Knowledge, and Support The future of cancer care is rapidly evolving, with AI agents, personalized medicine, targeted therapies, and immunotherapies playing an increasingly important role.
You need a platform to help you navigate this new landscape, providing you with the information and support you need to make informed decisions about your cancer care.
To address these problems, you need access to: ●Concierge testing guidance : Selecting the latest diagnostic tests and technologies tailored to your individual needs, such as whole-genome sequencing, blood panels (liquid biopsies), and proteomics.
●Personalized navigation : Having a health navigation service to streamline the process of finding and accessing the right tests and the best providers and relevant/local services that match your particular needs, combined with a health data vault to manage your records and preferences.
●Education: Including curated information and expert guidance to help you understand your options, make informed decisions, and navigate your cancer journey with confidence. ●Community: Linking you to other patients that have traveled down similar paths you are on to ask questions, feel emotionally supported, and get recommendations.
Ari Akerstein and Brad Power are uniquely qualified to lead a discussion about the design and development of a "one stop shop" for diagnostic and navigation services for cancer patients and caregivers. Ari is a software product manager with experience at Meta/Facebook, Walmart Labs, and Included Health, and a cancer survivor.
Brad is a process innovation consultant, the co-founder of the Cancer Patient Lab, and a cancer survivor. Together they hosted an accelerator (cancerhackerlab.com) for a dozen cancer diagnostics and navigation startups at the end of 2024. They learned that few startups try to serve consumers (patients and caregivers) directly.
The incentives in healthcare drive founders to pursue a business model where they sell to pharmaceutical companies or providers. What are the challenges patients and caregivers faced in getting diagnostic tests and interpreting them?
ups try to serve consumers (patients and caregivers) directly. The incentives in healthcare drive founders to pursue a business model where they sell to pharmaceutical companies or providers. What are the challenges patients and caregivers faced in getting diagnostic tests and interpreting them? ●False positives: Patients who get more tests will have to deal with false positives.
●Noise: Some of these tests have gotten so good at finding stuff that they pick up noise, things that your immune system is going to deal with just fine. ●Interpretation: Patients need help from trusted experts to interpret test results and provide context. ●Education: Patients need a glossary and other education materials to understand test results.
They don't know what they don't know, and they don't know how to find out. ●Retesting: Retesting is useful to confirm results and increase confidence.
“Empowering Cancer Patients: Navigating the Complexities of Diagnosis and Care” (Ari Akerstein and Brad Power) [#130] ●Guidelines: Getting doctors to try new tests is hard enough; they don’t consistently follow the testing guidelines. Everyone should get basic tests, like DNA sequencing. Some doctors don’t prescribe the recommended tests because of a lack of education and inertia.
●Test results concordance : How to interpret apparent contradictions between test results. ●Advice concordance : You're going to have competition from online search engines, what people like to call “Dr. Google”. You can get good advice, you can get bad advice, and you can get the full range in between, and there is no easy way to tell the difference.
●Useful long-term, but not now : Some tests will not change the course of your therapy now, so there's no point in wasting time, attention, and money on tests that are going to give you background information. How should you decide when to try a new test, especially one that’s not standard?
●Skepticism: When science uncovers technologies or insights that are new, it's really hard to figure out if they are useful. Skepticism is a natural reaction. When innovations first come out, people have reservations about whether they are true.
In healthcare there is a built-in system to generate evidence that a new approach is worthwhile, the prospective, controlled, randomized clinical trial, and that is put into practice through medical practice guidelines, called “the standard of care”. It is effective, but extremely slow and expensive. ●Safety: To go off of the standard of care is dangerous.
It's the safe decision at a certain point to stay on the standard of care, and then at a certain point, as the acceptance of the value of a new test increases, it probably becomes the safest decision to go beyond the standard of care. ●Tipping point: Figuring out when to switch between those two “safeties” is very difficult.
nce of the value of a new test increases, it probably becomes the safest decision to go beyond the standard of care. ●Tipping point: Figuring out when to switch between those two “safeties” is very difficult.
How can you acquire the wisdom to evaluate the potential flood of information that you can get from all of these diagnostics, some of which are going to have good information, and some of which are going to have bad information? ●Diagnostics vs. treatments : Treatment decisions have serious impacts. Deciding whether to get a test to get information is and should be held to a lower standard.
As Bryce Olson said, “Mo’ data is mo’ bettah.” There are costs to tests, and tests need to be interpreted correctly, but these problems can be solved. How can test results and advice be trustworthy? ●Multiple sources: Get multiple tests and triangulation of multiple sources, from multiple oncologists in different specialties, like pathologists, smart generalists, and community.
●Experts: Find an expert whose advice you trust, usually a doctor, someone with a beginner's mindset who is looking for potential solutions. ●Engaged patients : Talk to other patients and see what their experience was, especially people that attend events like this and probably have seen quite a lot. What was the feedback on the early design concepts that Ari and Brad are building?
“Empowering Cancer Patients: Navigating the Complexities of Diagnosis and Care” (Ari Akerstein and Brad Power) [#130] ●Good questions: The quality of the answer is going to depend on the quality of the question, so help them design good questions.
●Access: Consider how to address the potential elitism and access issues in paying out- of-pocket for advanced diagnostic services ●Present and future information value : Help patients justify a test (to their doctor or their insurance company) that is going to provide information that won’t be useful in a treatment decision now, but may be useful longitudinally or in the future.
How can you learn more? ●Sign up to be part of a user test group to help review and develop services - contact Ari at ari@cancerhackerlab.com or Brad at bradpower@cancerpatientlab.org. ●Develop your principles about your profile on when to pursue novel diagnostic tests versus staying within the standard of care.
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.
“Empowering Cancer Patients: Navigating the Complexities of Diagnosis and Care” (Ari Akerstein and Brad Power) [#130] Meeting Notes
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