Cancer treatment is not one-size-fits-all. Thanks to medical advancements, people receiving a cancer diagnosis might have many potential treatment options, ranging from established, “tried-and-true” treatments to experimental ones. But in many cases, it’s up to you, the patient, to drive conversations with your medical team about the options and determine which treatments are best for you.
Data can help. Data is behind the explosion of “precision medicine” and “personalized medicine”—and now, data can be used to identify the best treatment options for an individual.
While it can be difficult to gather this personal health data—which can be spread out across a variety of sources including difficult-to-decipher doctors’ notes and medical records—it’s worth the time and effort to land on the best treatment for you. And fortunately, new technology, such as tumor gene sequencing, electronic medical records, and mobile apps, can help you access and manage this data, enabling you to proactively participate in what used to be a closed system.
To access your data, you need to be persistent
It’s difficult to access and manage your personal health data, especially when you and your loved ones are feeling scared, depressed, anxious, and hyper-aware that time is of the essence. But you need to break through the barriers to get the best possible treatment.
You need to be persistent. When I was diagnosed with lymphoma in July 2018, I asked for the tumor’s DNA to be analyzed (or “sequenced”) to help determine my best treatment options. My doctor agreed, but the sequencing was repeatedly delayed. Finally, in May 2019, 10 months later, I was informed the sequencing was complete and my oncologist would review the results at my next appointment in August.
Fortunately, the prognosis was good: my cancer should not progress in the next five years.
Even if you manage to get the data, it’s challenging to transfer it from one hospital to another. Former U.S. Vice President Joe Biden described these challenges following his son Beau’s diagnosis of Stage 4 glioblastoma, a serious brain cancer. “I'd like to say there is widely distributed and applied techniques and mechanisms to share data among researchers, clinicians, and patients, but I can't. I'd like to be able to say that cancer diagnosis in St. Louis is decipherable by another doctor in Memphis, in the case of a patient who moves or seeks a second opinion, but I can't say that,” he said. Similarly, a close friend of mine, whose wife was diagnosed with ovarian cancer, spent several days combing through thousands of pages of his wife’s medical records to prepare for appointments to get second and third opinions as her treatment options began to dwindle.
Why manage your health data now?
What can happen if you can’t access all of your information? Doctors will start with the conventional treatment, which can have harmful side effects, if the treatment even works on your cancer. You might miss out on clinical trials, targeted therapies, or off-label drugs, which can be more effective and less invasive. You can miss integration of your health history, oncology, nutrition, etc. And you can miss errors, such as wrong diagnoses and medication interactions, which can lead to serious complications.
There is an explosion of data you can gather about yourself: your medical history and records; gene sequencing of the tumor, healthy tissues, messenger RNA, and your microbiome; and data from personal monitoring devices, like an Apple Watch. At the same time, there is an explosion of possible therapies, and the speed of change in diagnostics, therapies, and the standard of care is accelerating. Healthcare experts struggle to match health data with appropriate treatment options.
Fortunately, there’s an app for that.
Improve your treatment, improve the healthcare system
By using new health data management services like mobile apps, individuals hold the power to drive and improve their treatment as well as accelerate improvement in the healthcare system.
Consider the speed with which consumers adopted AirBnB, Amazon, Uber—dramatically disrupting incumbent hotels, retailers, and taxi companies who had been slow to change. By adopting data services, consumers—patients—can push hospitals, physicians, and payers to change, too. This disruption may overwhelm them with data, and they may resist or even raise some costs. By bringing your data to your trusted healthcare team, however, you can help accelerate the potential for personalized care (and the potential for lower costs) for everyone.
When using apps or other data management services, it’s important to ask yourself two questions. First, are you trying to manage your cancer-related data, your DNA data, your medical records data, or all of the above? Second, is your goal to manage your data to get personalized care in the immediate term, to provide your data to medical research, or both?
Have you read?
This framework points to several steps you should take to improve your treatment with personalized data if you or a loved one has cancer.
With these answers in mind, here are five steps you can take to improve treatment for yourself or a loved one through data.
- Use your doctor’s patient portal to access your electronic medical records. Here, you’ll find data such as test results, but keep in mind that, because these records are primarily used for insurance reimbursement, they usually do not contain detailed genomic data, health behavior data, or data from medical devices or wearables. You’ll need to do more.
- Enroll in a DNA testing service and participate in their surveys. I was an early user of 23andMe. By responding to periodic surveys about your health and personal traits, you can contribute to medical research.
- Seek out additional diagnostic tests to build your health profile. As I prepare for the high likelihood of an eventual relapse of my lymphoma, I intend to obtain more data about my tumor tissue, healthy tissue, RNA transcriptome, and microbiome. I’ll put this in a personal data repository to use to get advice on my three-to-five best treatment options. I’ve also signed up for a clinical trial with a new blood biopsy company to get personalized biomarkers to track my cancer’s progress. I will release my data to several service providers who specialize in treatment recommendations to get a variety of personalized options.
- Use an app to put all your data in one place. Several consumer apps allow you to access electronic medical records from all of your providers, compile them in one place, and share them with everyone involved in your care via mobile or web interface. And some allow you to manage not only your medical records, but also data from health services and sensors, such as an Apple Watch or Fitbit, as well as your raw genomic data (as opposed to just a summary report). [Full disclosure: I’m a founding member of a startup, myCancerDB, which will provide health data management services.] These apps can also help you discover personal health insights with an associated AI-powered treatment recommendation engine. Eric Topol, medical doctor and author of several books on disrupting healthcare through the use of data for personalization, used an app called Seqster to compile his medical data, sensor data, and test data.
- Sign up for a service to share your health information. Through research programs such as Count Me In, you can share your medical information, tumor samples, and experiences with researchers to accelerate the discovery and development of new treatments. You provide copies of your medical records, send saliva and blood samples, and allow access to your stored tumor tissue. After my diagnosis, I volunteered for NIH’s All of Us research program. After I consented to give them access to my medical records, all I had to do was go to a local hospital to give a urine sample and spit sample. After this serious analysis of treating a very serious disease, doesn’t that sound less grave?
Disclaimer: In this article, I have shared how I think about my treatment. There is no guarantee the diagnostic data I will get, and which I advocate for you to get, will make a difference in my treatment. My approach is not intended to take the place of the recommendations of your professional healthcare team; rather, I offer it as something to consider in your deliberations with them.