How to Advocate for Yourself: Advice from an Empowered Lymphoma Patient
In 2018, on a trip to Lake Tahoe, I went to the emergency room for excruciating belly pain that was keeping me from sleeping. To my surprise, the care team discovered that my pain was due to lymphoma.
I soon started a three-month treatment with a combination of chemotherapy drugs known as R-CHOP. Thankfully, it went well. After my treatment, I had a scan that showed no evidence of disease, and today I’m feeling great.
However, my lymphoma could recur someday, and I’ve spent all my time since my diagnosis reading, attending conferences, and meeting people to get smarter about my disease and treatment options. While learning about my own disease, I also discovered the importance of advocating for oneself.
A major turning point came in late 2018, when I attended a conference on personalized medicine at Harvard Medical School. One of the leaders of the conference and a senior leader at one of the academic cancer centers said that all the patients at his institution had the DNA of their tumors sequenced to help inform treatment decisions.
I stood up and said, “I’m getting treated at your institution, and I respect it very much. I’m sure that your policy is what you say it is, but it’s not happening at the front lines. I’ve asked my oncologist four times to get my tumor sequenced, and it hasn’t happened yet.”
The speaker was very generous in accepting my criticism, and I sensed the frustration he felt in trying to implement a policy among autonomous physician-researchers at his institution.
Still, afterwards at breaks in the conference, eight or so people came up to me to thank me for giving a dose of reality to the meeting. They further said that because I was a cancer patient, I had a voice and credibility.
My New Purpose
I kept pushing for my tumor DNA to be sequenced, and finally, after almost a year, it happened. This genetic information could help me and my care team decide on my next treatment, should my cancer recur.
In advocating for myself, I discovered a calling to help others do the same. I realized that I could apply my background as a consultant in helping organizations use technology to change work, as well as my role as a frequent contributor to the Harvard Business Review, to accelerate patient engagement and empowerment.
I decided to share what I’d learned from my own research and write about what people with a cancer diagnosis should do to understand their disease and find their best treatment options. I identified ten jobs to be done, from finding a doctor to gathering health data, and started to identify companies offering those services, especially startups providing online services.
One of the jobs I identified was getting specific, personalized information about treatment options, sometimes called “second opinions.” I found about 75 companies offering these services, from those that provide diagnostic services and recommendations, analysis for all diseases, and some with a focus on cancer.
As part of this research, I discovered Cancer Commons and was particularly intrigued by its business model—serving patients and caregivers directly (versus physicians, researchers, or insurance companies) at no cost to patients.
I learned that Cancer Commons’ approach aligns with a central component of my advocacy work: to help accelerate the adoption of innovative approaches to cancer treatment.
Cancer Commons starts its relationship with each patient by providing information about his or her best personalized treatment options. And it’s more than a transaction. Cancer Commons maintains an ongoing relationship with each patient to track his or her progress.
Other institutions and companies offer similar information and advice through “molecular tumor boards,” but what sets Cancer Commons apart is its intention to help everyone learn by sharing what works and what doesn’t. This sharing depends on managing health data, which plays to the cultural roots and unique skills of Cancer Commons in applying data methods and approaches from Silicon Valley to health data.
By tracking and sharing what each patient does longitudinally, Cancer Commons provides me and other cancer patients with an analysis of people who have gone before me that will yield the most useful insights on what I should do next. Cancer Commons is driving a process that continuously learns what is working best.
As a cancer patient with a likelihood of recurrence of my disease, I need the hope that comes from the rapid introduction of innovative, personalized treatments. I believe that our healthcare system isn’t adopting new treatments fast enough. We need faster, disruptive innovation, and I see the glacial, incremental improvements that will come from the incumbents in the healthcare industry (hospitals, payers, pharmaceutical companies) as insufficient.
Instead, we need to rely on the kind of disruption that has reshaped other industries, such as that spurred by AirBnB and Uber, where engaged consumers and startups have driven major change. I hope that I can help accelerate the engagement and empowerment of patients to network with each other and partner actively with their healthcare professionals—shifting from being passengers to responsible drivers of their own health.
My Advice: Engage in Your Treatment
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.
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.
How to Advocate for Yourself
Those who are interested and have the resources to actively engage in their own care are a small subset of the entire population, since most people would prefer to either avoid the issue, let their doctors make all the decisions, or they can’t afford the money or energy to engage.
You may be in awe of your physician and not feel comfortable or equipped to ask questions or share in the decision-making about your care. Given these realities, how can you find out more about what you need to know about your disease and advocate for yourself?
You and your caregiver should use online services like Cancer Commons. In addition, you should join some of the many grassroots online cancer communities to learn about your specific disease and treatment options, such as Colontown, which serves people with colorectal cancer. These online communities can provide useful, specific, and timely information in ways that are easy to digest.
Another potentially helpful online resource is SequenceMe, which explains the power of genomics and makes the case for getting your tumor DNA analyzed. You should also consider joining groups that specialize in organizing activities to accelerate development of innovative treatments for your cancer and can help you get access to them. These include the Multiple Myeloma Research Foundation, the Global ROS1 Initiative, the Pacific Pediatric Neuro-Oncology Consortium, and the Count Me In initiative (currently organizing research for metastatic breast cancer, metastatic prostate cancer, and angiosarcoma).
Patient advocacy has given meaning and purpose to my cancer diagnosis. I hope that my work will empower many additional cancer patients and caregivers, so that all patients can receive their best possible treatment.
To read more of Brad’s thoughts and recommendations for cancer patients and caregivers, please check out his website, Reengineering Cancer Treatment.