As originally published on weforum.org
Getting to your best cancer treatment depends on accessing lots of data about you and providing it to experts and expert systems to get their recommendations. Unfortunately, getting access to and managing the large volumes of your health data has been slow, awkward, and complex. Fortunately, there are new apps for accessing and managing your health data, enabling you to proactively participate in what used to be a closed system.
Data is the feedstock and foundation for the explosion of unique treatment solutions for everyone (“precision medicine” and “personalized medicine”). If you have a cancer diagnosis, you may be lucky and have a “tried and true” treatment that lines up with your cancer, as it did for me. But for many people with a cancer diagnosis, there are many treatment options, some of which are experimental, and you need to figure out which are the 3 to 5 best cancer treatment options for you. To identify your best options, you need to get as much data about you as possible, yet the data are often spread out, or in difficult-to-decipher doctor’s notes or reports in medical record systems. Once gathered, your data needs to be easily available to experts and expert systems for the matching process, and to medical researchers to advance therapies.
It’s Slow, Awkward, and Complex to Manage Your Health Data
The current systems for getting access to and managing the large volumes of your health data are slow, awkward, and complex.
- Slow: It takes a long time to pull together and analyze all your relevant health data while you and your loved ones are feeling scared, depressed, anxious, pre-occupied, and hyper-aware that the clock is ticking in response to a cancer diagnosis.
- Awkward: It’s harder than you might expect to overcome the barriers to accessing, assembling, and linking all of your potentially useful health data.
- Complex: It’s overwhelmingly complicated to sort through all the potentially useful data to extract the key data nuggets that are essential to driving critical insights.
Consider these stories of data management challenges suffered by people with cancer diagnoses:
- Slow — It’s hard to get data from your medical tests: In July of 2018 I was diagnosed with lymphoma. My tumor was biopsied twice at a leading cancer center. I asked to have my tumor sequenced many times because I had heard it could be very useful in helping me find my best treatment options, but it didn’t seem to be important and kept being put in the next processing batch. Finally, 10 months later in May 2019, I was informed, after asking repeatedly, that the sequencing had been completed and my oncologist would review the results with me at my next appointment in August.
- Awkward — It’s hard to get medical data from one hospital to another: Former Vice President Joe Biden has railed against the infuriating challenge of getting his son Beau’s medical records from one hospital to another (Walter Reed to MD Anderson) when he was battling a serious brain cancer (Stage 4 glioblastoma). “When my boy was dying, I asked whether or not … we could have access to his cancer genome sequencing in a great hospital. They said, ‘Well, that’ll be hard.’ … Why is it that hospitals are reluctant to allow that data being transferred? Because you might go somewhere else… I’d like to be able to say that there are 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 either.”
- Awkward — It’s hard to share data to coordinate care across multiple personal health issues: Shari Mills (I’ve disguised her name) was diagnosed with breast cancer and had breast surgery, which went well. Then she saw her medical oncologist for her next steps, but the oncologist hadn’t looked at Shari’s medical history (which included chronic pain and fatigue) and medications. When the oncologist started talking about a hormone therapy (an estrogen blocker) that causes bone pain, Shari had to tell her that if she took the recommended therapy, she would need to come off one of her essential medications.
- Awkward — It’s hard to transfer large health data files: In March 2017, Steve Aldrich was diagnosed with a cancer (end stage adenocarcinoma in the esophagus) for which there is no known treatment and 90% are dead in the first year. But Steve had done research on the implications of the rapid advance of gene synthesis and gene sequencing technologies in revolutionizing cancer therapies. Craig Venter of Human Longevity, Inc., (HLI), offered to do a full set of analyses of Steve’s cancer tissue and his biomes. And a German doctor offered to develop a personalized therapeutic vaccine for Steve if the doctor could get Steve’s genetic data, which was big, in many file formats, and scattered around HLI. Steve had to ship hard drives with his health data to Germany.
- Complex — It’s hard to assemble data for a second opinion: Ed Clark (I’ve changed his name) has been helping his wife consider her treatment options since she was diagnosed with ovarian cancer several years ago. She has been through surgery and multiple rounds of chemotherapy. As her options become fewer, they have gotten second and third opinions, searching for clinical trials and hope, including one at Memorial Sloan Kettering, one of the leading academic cancer research centers. As preparation for their visit, Ed spent several days combing through thousands of pages of his wife’s medical records at Kaiser and UCSF to prepare the forms Memorial Sloan Kettering needed for the visit.
Not having access to all your data can result in bad outcomes, such as:
- You can miss personalization opportunities — get treated with a drug that you could know in advance won’t work for you or take a drug that isn’t the best fit for you.
- You can miss out on access to new, less invasive life-saving options, e.g., clinical trials, targeted therapies, off-label drugs. Instead, you will start with the standard of care: tried and true, but usually with harmful side effects.
- You can miss integration (oncology, nutrition, health history, …).
To access your data, you need to be persistent
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?