by Brad Power, Process Innovator and Cancer Treatment Re-engineer; diagnosed with lymphoma in July of 2018
Summary: The potential of next-generation sequencing to revolutionize cancer treatment by enabling personalized therapies is still more promise than reality. Despite the best intentions of leaders at academic cancer centers, the translation of sequencing technology’s potential into medical practice remains in its infancy, and adoption is excruciatingly slow for people like me with a cancer diagnosis. What is the hold up? Where can the disruptive breakthrough occur? The greatest hope for accelerating personalization in cancer treatment is for people with a cancer diagnosis to educate themselves about their treatment options and be an advocate for their treatment.
In November, I attended the Annual Personalized Medicine Conference at Harvard Medical School, which is organized by the Personalized Medicine Coalition and attended by “the world’s leading researchers, investors, industry executives, policy experts, payers, clinicians, and patient advocates.” I was attending in my role as a journalist, someone who has written over 75 articles for The Harvard Business Review. My specialty is process re-engineering (how technology can enable new ways of work). Following my diagnosis of lymphoma in July, I have focused my research on cancer treatment. For me, improving cancer treatment is personal. I was in the last cycle of my chemotherapy treatment during the time I attended the conference.
One conference attendee went to the microphone during a panel discussion to say that at his institution, they are sequencing all of their patients (with the implication that more institutions should make such a commitment). It happened to be the same institution at which I was getting treatment. I quickly went to the microphone and said, “I am a patient there, and I’m currently getting chemotherapy (as I motioned to my bald head) for lymphoma. I have a deep respect for your institution, and while I’m sure that every patient there is supposed to get sequenced in theory, I must tell you that it is not happening in practice. I had to ask my oncologist three times to get my tumor biopsy sequenced, and on the fourth time I brought it up, he handed me a brochure and said it would be done in the next batch.” I’ve followed up several times to find out when I will get my results, and I’ve been told that it may be three months. About eight or 10 people approached me in the remainder of the conference to tell me that they really appreciated my comments showing the reality vs. the hype of actual patient experiences. Several of these people shared similar stories about a loved one who they were helping navigate through a cancer diagnosis. They, too, faced a lack of interest and dismissal of their attempts to use sequencing information to tailor treatment.
The Slow Adoption of Sequencing to Tailor Treatments
The promise of next-generation sequencing to tailor treatments to everyone with a cancer diagnosis faces the reality of slow adoption as a standard approach. The current system isn’t delivering the potential of personalized cancer treatment — patients aren’t being directed to the best options for them. Adoption is being slowed by (1) the conservatism of health care providers; (2) patients who aren’t aware of next-generation sequencing technology and personalized therapies; and (3) payers who aren’t reimbursing patients and providers for next-generation sequencing.
The Need for Leadership from Health Care Providers, Patients, and Payers
Making sequencing of adequate breadth and depth and the associated personalization of cancer treatment the “standard of care” will require leadership from health care providers, patients, and payers.
- Health care providers must make sequencing and personalization the standard of care, even though it may disrupt their “tried-and-true” processes, overwhelm them with data, face resistance from payers, raise some costs (while saving others), and challenge their traditional patient relationships. They must trust in a process to find the optimal therapy in a more consultative, peer-to-peer relationship.
- Patients and their support teams must educate themselves about treatment options and be advocates for their treatment, including asking for sequencing of adequate depth and breadth (including clinical level whole-genome sequencing of their healthy and tumor tissue, sequencing of their transcriptome RNA, and sequencing of their microbiome).
- Payers must reimburse these sequencing costs, including repetitions, ideally for everyone with a cancer diagnosis but at minimum for everyone with a late-stage cancer diagnosis. While the federal government — The Centers for Medicare and Medicaid Services (CMS) — is paying for sequencing, many commercial insurers haven’t yet followed suit.
Accelerating Personalization in Cancer Treatment
What can we do to accelerate the use of sequencing and personalization in cancer treatment?
Getting providers or payers to change their processes will continue to be a slow road to widespread adoption. I’m hoping that consumer empowerment can be the disruptive force that our health care system needs. At the Personalized Medicine Conference, panelist Michael Pellini, M.D., Chairman of Foundation Medicine and Managing Partner of venture capital fund Section 32, argued that, “Patients are going to force us to figure this out.”
Many patients aren’t equipped to lead their cancer treatment, but people with a late-stage cancer diagnosis get up the learning curve fast since they are motivated to become engaged leaders of their care. As another panelist, Susan McClure, Founder of Genome magazine, asserted at the Personalized Medicine Conference, “Never underestimate a person’s ability to grasp complex information when their life depends on it.” She led a discussion with Bryce Olson, who is a good example. He said, “I’m a country boy from a small town in Montana. But I came up the learning curve very fast when I was diagnosed with metastatic prostate cancer.” For informed and engaged patients with a cancer diagnosis like Bryce Olson or myself there is no structured process or legal, insurance, or regulatory framework — as there is for oncologists — for us to make critical decisions, even though we are the ones directly affected. So, we must carve our own path.
Here’s what I’m doing, and what I recommend to anyone (a friend or family member) with a late-stage cancer diagnosis:
First, I’m going to capture my health data. The data will include raw sequencing data of sufficient depth and quality for my whole healthy cell genome, my whole cancer cell genome, my microbiome, and my cancer “transcriptome” (RNA). After several requests, my provider is sequencing my tumor sample that came from my biopsy. I’ll get the other data from additional service providers. And I’ve signed up for a clinical trial with a new blood biopsy company to get personalized biomarkers to track my cancer’s progress.
Second, I will release my data to several service providers that specialize in treatment recommendations to get a variety of personalized treatment options.
Who knows what I will find? Hopefully there will be a therapy that is precise, with few toxic side effects, and that supports my native immune system (e.g., tumor-infiltrating leukocytes). Right now, it seems like a personalized vaccine may be the best option. Stay tuned!
January 18, 2019 at 12:13 pm
Brad Power raises important points as the healthcare industry grapples with the impact of unravelling of human genetics on the standard of care. Power’s experience poignantly details both the promise and the problems. A key element of the move to new practices is the dramatic gap between the rate of progress in cancer diagnostics and cancer care. Also at odds in the current state is the lack of knowledge to make prudential decisions about care strategies, the assessment of risk, and disease progression. The diagnostic tools provide immense visibility into the disease state and even the unique elements of its progression within a patient, but the care team is faced with an increasing palette of options for care, some of which have incomplete information as to efficacy. For some cancers the mutation of the disease and efforts to fight the disease as it mutates can in themselves degrade the health of the patient. For care teams it is truly a new world. For care organizations it is a call for innovation and a rethinking of how to incorporate a rapidly innovating field into the practice of care while optimizing patient safety. Clearly the standard of care is poised to change significantly.
It seems that the the approach that Power takes is prudent for an individual, that is, take advantage of progress made in the diagnostic realm, be vigilant in following new findings about the disease and promising treatment options, and employ the growing industry of labs and analysts that provide additional services and information.
January 21, 2019 at 8:23 pm
Nick: Thanks for your comments. If I hear you correctly, you’re saying that the rapid progress in genomic diagnostics and treatment is creating several pain points: (1) diagnostics are ahead of therapies — we know more about our cells and their mutations, but the therapies aren’t keeping up, (2) diagnostics and therapies need to connect — we need to be able to match diagnostic insights to therapies and vice versa, and (3) there’s an explosion of information and options — we are overwhelmed by the complexity that is opening up?
February 14, 2019 at 2:24 pm
I think the final point Nick made was that the challenges for care teams are increasing at a dramatic rate, due to the first two points. How is a care team supposed to keep up, know whether the information they collected is good/accurate, and is the treatement recommendation they uncovered the best one available?
I come at this from the Information Technology side of things. I can tell you it isn’t trivial to provide care teams with the proper sysems to discover and collect all this data and make it consumable in a fashing that enables a confident decision to me made. Even if your care teams want to provide that level of care, there are a lot of things that need to be put in place to put htem in a position where they can make an informed decision.
Not an excuse, just tells you that your point about health care institutions needing to make a commitment from the top is critical if they hope to be able to deliver Precision Medicine to their patients.
February 14, 2019 at 9:03 pm
Joe: Since you’re an information technology expert, what if the data about the patient were fed to several recommendations and matching engines or algorithms, and returned with the top 3 to 5 treatments, personalized for that patient? (This is assuming a “plug and play”, modularized services architecture.) This would seem like a classic case of augmentation, with machines sorting through the complexity and returning a recommendation to the humans, who can review the logic about how the machine arrived at its recommendation. And with the right componentized architecture, even feed several machines the same task and see if they all agree, increasing confidence? There have been systems helping providers make decisions about prescribing drugs like this for over a decade. Given the increasing complexity of health options, providers will need to learn to rely on help from machines?
February 15, 2019 at 1:24 pm
Brad: You are absolutely on the right track!
Indeed, the leading cancer research institutions are able to accomplish pretty much what you have described. They are able to do this because they have access to large enough datasets of patients, and connections to clinical trial registries, curated pathology images, etc., and advanced IT departments and large enough budgets, that they can pull it off.
I am in the process of coming up with a business plan for a consulting practice to help smaller healthcare provider institutions make the connections and perform the analyses and make the informed decisions that you describe. It just doesn’t seem to be happening fast enough. I think the complexity isn’t insurmountable, but there are enough difficult issues and required changes in workflows to cause the delays which you and many others are experiencing in realizing the benefits of Personalized Medicine.
March 16, 2019 at 1:22 am
When it comes to treating cancer, usually people who are diagnosed with the late stages of the disease turn out to be the ones who take the lead when it comes to taking care of themselves since they’re the ones who are actively battling the disease. Another thing that I noticed is that when it comes to looking for treatment, patients have the tendency to compile their personal information and then ‘advertise’ it to various doctors who specialize in treating it so that there might be a way to be able to treat the condition. While I have no experience when it comes to cancer, I can safely say that it’s very important to take the lead when it comes to taking care of oneself when cancer is involved.
March 17, 2019 at 9:43 am
There’s a lot wrapped up in the compiling of health information and then advertising it to doctors who can give advice on treatment. It’s not easy to do today. What have you seen? A friend took several days to gather and organize health records data in order to go get a second opinion. My friend Steve Aldrich had his sequencing data on a hard drive and had to mail it to people to work with his data
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