By Anna McCollister-Slipp
Anna McCollister-Slipp is co-founder of Galileo Analytics, a visual data exploration and advanced data analytics company focused on democratizing access to and understanding of complex health data. She is a member of the judging panel for the $10M Qualcomm Tricorder XPRIZE.
The digital health revolution has failed... so far. The industry that has grown up around it -- to cheer it on and promote its potential -- is thriving. But while those who organize conferences, found coalitions and work as consultants gain acclaim, write books and give TED talks, patients and physicians wait for the promise of the digital health revolution to become a reality.
We're tired of waiting.
For those of us with chronic disease, a digital health revolution is the best chance we have. We need it to succeed. We're desperate for innovation that works. We have experienced tremendous developments and intuitively grasp the potential, but when we peruse the app store and download a few, their usefulness rates as "meh" at best.
We stare longingly at Apple's new Health app on our iPhones, only to discover it can't access our data. So back we go to tracking our information on multi-page printouts, or Post-It notes, or in our heads. We receive our lab results via fax, phone, in the mail, or if our doctors are willing to take the risk -- via email. We see news stories detailing the government's investment in the digitization of health and are awed that so much money and discussion can produce such limited results.
In the past five years, we have committed $33 billion taxpayer dollars to digitize our nation's health care data. The need was unquestionable, and the potential gains are tremendous. However, the system that has emerged has essentially replicated -- in digital form -- the acute care-focused health system that has been failing us for decades as we grapple with the growth in chronic disease.
Few of the hospitals receiving government incentive payments to install digital health tools are willing or able to incorporate the data generated by a patient's personal medical device into that patient's electronic health records, even for data-intensive diseases like diabetes.
At the same time, according to StartUp Health, since 2010, we have invested nearly $13 billion in mobile and digital health ventures aimed at building apps to promote health. But those who could most benefit from these new tools -- those with chronic disease -- aren't using them. In fact, most of the "health" apps available to date are for those who are healthy.
A 2013 IMS Institute study showed that of the nearly 44,000 "health" apps in the app store, less than half were legitimately related to health. Of those that were, most were focused on prevention or wellness, with fewer than 2,000 aimed at individuals with a diagnosis. And of those that were downloaded, few were used regularly. A separate study by Research2Guidance, which looked at diabetes apps, was even more damning. Despite numerous surveys citing diabetes as the ultimate example of a disease that will benefit from mobile health, only 1.2 percent of diabetes patients with smart phones use digital health apps because of the need to manually input data.
It's not that we aren't tracking our information -- we are. A recent Pew study shows that while most Americans living with chronic illness track certain health metrics related to their disease, 41 percent use a pencil and paper, while 43 percent say they track of things "in their head." (Both of which tend to work better than most health apps available today.)
Life with Digital Dysfunction
So how does this all play out? Let's use me as an example: Like many patients with Type 1 Diabetes, I have a number of co-morbid diseases, complications and diagnoses. Each day, I take 15 medications. I use eight medical devices (four that are prescription, four that are not). Two devices are literally attached to my body 24/7, and the rest are never far from of reach. In 2013, I saw 13 different physicians and had a total of 63 doctor's appointments. I had multiple blood draws tracking more than 100 lab values -- all the while being sure to eat right, get plenty of sleep, and do several forms of exercise.
How much of this did I manage digitally? Not much. I'm swimming in data that could be helpful, but that data is mostly inaccessible. All of my devices generate data in one form or another: my continuous glucose monitor generates glucose levels every five minutes, 24/7. My insulin pump records the dosage of my insulin and stores the data for months. My blood glucose meter stores the glucose measures I take between five to 10 times a day, and my fitness tracker, digital scale, heart rate monitor and blood pressure cuff all generate electronic, structured data that could be easily combined into a single timeline to illuminate important patterns that could help me manage my health. It could be helpful, but it isn't. Accessing the data stores is clumsy at best. I can't even download my CGM data to my Apple computer -- the software only works on Windows. Even when I can access the data, the process takes hours, and combining it manually for most people is impossible.
And it isn't just about the devices. I receive most of my medical care at a large, academic health institution located less than five miles from where our nation's health IT policy is generated, but I still can't access my electronic health record online or communicate with my physicians electronically. And, the hospital's IT department refuses to give my endocrinologist access to the free software required to download my CGM data on his computer.
Despite the fact that the major diagnostic labs in the country have been sharing data electronically with physicians for years, the only way I can get my lab results is through emails from my physicians who choose to risk a HIPAA violation to give me the information I need to manage my health. None of my physicians use electronic scheduling, despite the fact that secure online scheduling tools have been available for years. And only one permits me to request prescription refills electronically.
Now here's the good news: All of this is fixable. The technology part is easy. We know how to make this work, but we lack the societal will to make it happen. The government can do much to push the system along, but device manufacturers, technology companies and hospitals need to do the rest. We spend billions to find breakthrough cures for the future, yet fail to follow through on the "easy" wins that can take us so far today.
Curing disease is difficult. Making data streams accessible and interoperable is not.