Holding a piece of my own brain for the first time was surreal. After staining the tissue, I was finally able to see my cancer. But I also felt a sense of empowerment, which I had earned after navigating the maze of barriers that deny patients access to their own data. Just to receive a few cubic millimeters of my baseball-size tumor, I had to enroll in a medical program, take a pathology class, and then apply for research access to my own tissue. It may sound crazy, but by then I had become accustomed to the absurd limits of patient data access, and I was not backing down. I wanted to understand my cancer and satisfy my curiosity, because it was curiosity that had previously helped save my life.
In college, I often volunteered for research studies. I wanted to help science, and I was also curious to learn more about myself. In 2007, I participated in a brain scan, and the MRI results detailed a small abnormality. I followed up with neurologists for additional scans in 2007 and 2010; there were no changes. Because I had no symptoms, there was not much concern, and I went about life as normal.
Then, in 2014, when I was in graduate school, I started to smell a faint vinegar-like scent for a few seconds a day. I remembered the research scan data and realized that the abnormality was near the olfactory center of the brain. I went back to the doctors, but they were not concerned. I pushed and eventually they booked an MRI scan for a month later. The scan detailed an astrocytoma tumor covering about 10 percent of my brain. Three weeks later, I had a 10-hour brain surgery during which I was kept awake and talking to ensure the surgeon did not cut my brain’s language center. Thanks to an amazing medical team and a community of loving support, I am doing well today.
“I wanted to see my sequence and share it with the world to benefit science. Instead, the reward for donating valuable tumor tissue was a legal barrier preventing me from seeing my future.”
Over the course of my treatments, I always gathered personal data to understand my cancer: clinical data, research data, and even self-generated data — all totalling around 200 gigabytes. Access to my data helped me make informed treatment decisions regarding chemotherapy, radiation, and suitable clinical trials. I was able to share my data with supporters to help my family and friends understand my condition. This even included giving my family bizarre Christmas tree ornaments — 3-D printed replicas of my brain tumor. And I publicly posted my data online for other patients to view and for researchers to use (if curious, check it out at stevenkeating.info). But the most surprising lesson I learned was how difficult it was to access my data.
Before my medical experience, I assumed that personal medical records were easily accessible to patients. But as I quickly learned, there were barriers everywhere — hurdles such as complicated paperwork, poorly designed (if any) access websites, long waits for 20-plus CDs to arrive in the mail, and poor (if any) data interoperability between hospitals. Once the information was gathered, there were no tools to process the complex data. For patients, even small barriers are mountainous.
The most difficult obstacles were legal gray zones. For instance, when I was asked to participate in a genetic research study, I thought I would have access to the sequencing results, because the study was a joint project with researchers from my university. However, even though my doctors and the researchers could see my genome and supported my receiving this data, the legal team denied my access because the sequencing machines were not in a clinically-certified lab that is able to routinely return results to patients. I wanted to see my sequence and share it with the world to benefit science. Instead, the reward for donating valuable tumor tissue was a legal barrier preventing me from seeing my future.
In the context of modern technology, these unexpected medical data issues seem ancient. The iPhone has over two million third-party apps available, and over 90 percent of them are free. The crowdsourced Wikipedia has 60 times more content than the leading commercial encyclopedia. And we trust the internet with valuable financial, personal, and social data. Yet hospitals are still using fax machines.
I started asking questions: Could a hospital “Share” button save lives? Increase research data? Provide feedback to doctors?
Projects such as OpenNotes, PatientsLikeMe, and the Open Humans Foundation are beginning to answer these questions by demonstrating incredible benefits. (See “Open Humans,” page 22.) For example, OpenNotes enabled electronic patient access to doctor’s notes. Starting in 2010 with nearly 20,000 patients at three hospitals, the results after one year were stunning: 99 percent of patients wanted continued access, about 80 percent reported that having access helped them feel more in control of their care, 70 percent of those who were taking medications reported better adherence, and approximately 60 percent wanted to contribute data. OpenNotes now has grown to over 11 million patients. Beyond doctor’s notes, imagine the amazing possibilities enabled by empowering patients with their clinical data.
“I encourage each of you to ask for your medical data. It may save your life one day.”
To start the next healthcare revolution, we need patient-controlled data access where information can easily be used with third-party tools. This could be accomplished by federally incentivizing hospitals to have clinical data application programming interfaces (APIs). Standardized APIs would transform the hospital’s current burden of providing data access into an open opportunity for industry, researchers, and citizen scientists. Hospitals could act as app stores by verifying apps so patients could find trusted tools that provide useful services. This would spark immense commercial development — things like healthcare versions of Google Maps, Dropbox, and Facebook.
Think of the scale. Facebook has over 1.7 billion users; if only a tiny fraction of the users wanted to share data, it would be the largest medical study in history. And with the user in control, the decision to see, use, and share data would be left up to the person with the most at stake — the patient.
I encourage each of you to ask for your medical data. It may save your life one day. Even if you never use it for medical decisions, having your data allows you to share it, and as I learned during my treatment, sharing in itself is a form of medicine. When I was diagnosed, I posted my data online for my family and friends in case they wanted to understand my condition. In response, they shared videos, emails, and love in many forms. It is a beautiful memory etched in the remainder of my brain — the powerful medicine of emotional support.