I consider myself a “spiritual” hacker. I don’t code – or rather, I’ve dabbled in it enough to know that it’s best left to others. I’ve never written a computer program or submitted an app to the iTunes store. The only language I write in is English. But what I’ve always been is a life hacker of sorts, borrowing and deriving bits and pieces from different places, different thinkers, new experiences and applying those things in new ways to disrupt or improve something that wasn’t working. Sometimes it was for work, finding new ways of framing or shaping policy discussions to help disrupt a stale way of thinking or move beyond prejudice. Sometimes it was for friendships – borrowing or choosing aspects of different people and combining them as a circle of friends that helped me cope with or explore life in a new way. Often, it has been for a cause or issue about which I cared deeply, borrowing bits of thinking or code from one area or discipline and applying it in a new way to help push for progress.
Over the past 10 years, however, increasingly my ‘hacks’ have been related to my health – finding new ways of staying healthy while living with Type 1 Diabetes and the myriad complications that this disease can and has caused with my body and life. In the early days, the diabetes ‘hacks’ were more about medication adjustment, understanding certain patterns that made it easier or harder to control my glucose or to operate and function when my glucose was uncontrollable. But, as treatments became better for diabetes and medical devices became a constant factor in my life, my way of thinking as a ‘spiritual’ hacker began to merge with the current understanding of hacking in our digital world.
Those of us with diabetes, especially type one diabetes, have been consumed with generating and understanding various forms of data about our life and health long before the term ‘quantified self’ or ‘digital health’ came into existence. Even those of us who were journalism majors have been forced to become fluent with an array of data streams, test results, data access protocols and mathematic equations and algorithms. It’s a 24/7 process that defines and shapes everything about what we do and how we live. How many carbs are in a caesar salad? A turkey sandwich? Divide that number by thirty to estimate your insulin dose, then multiply that by your current glucose level – if it’s low the dose is lower, if it’s high you take more insulin. If you’re going to the gym or walking the dog within the next hour, then subtract the estimated glycogen burn and you have your decision. Sort of… Over time, the process becomes automatic, almost instinctive. Sometimes you get it right, sometimes you get it wrong.
In recent years, as fitness trackers have proliferated and everything from scales to blood pressure cuffs and energy trackers have begun generating electronic forms of data, the math has grown more complicated. The opportunity to combine it all into an integrated data stream would represent great progress. But, for reasons that – despite a lot of effort on my part and many others – that just hasn’t happened.
At present, I use four medical devices, three of which generate electronic data, two of which are attached to my body 24/7. Always. None of the devices are connected. None of the data is combinable. One, my continuous glucose monitor, can’t even be accessed on an Apple computer. In addition, I have a blue tooth blood pressure monitor, a digital scale that gives me important information about my hydration and lean body mass, a food tracker, an energy tracker (for anemia) and the ubiquitous fitness tracker. All of this information is helpful, but it isn’t very informative. Because each devices uses a different download platform and most don’t release their APIs, it’s impossible to integrate the data streams into a coherent picture that illuminates patterns in health or behavior that would better inform my treatment decisions.
It would be laughable if it weren’t so potentially harmful. What most people who don’t live with type 1 diabetes don’t realize is that insulin can easily be a fatal drug. Take too much at lunch, and you could go dangerously low during an afternoon meeting. Exercise a bit more than usual and you can have an unexpected drop in the middle of the night. Err on the other side, and your blood sugar goes too high. In the short term, you’re sluggish and a bit lethargic. In the long-term, you could go blind, lose a limb to nerve disease or find yourself on a transplant list. Those of us who live with diabetes have been forced to confront this reality in one way or another. That’s our reality. Sooner or later, you have to comes to terms with it.
The reality that I and many others in the diabetes community can’t quite grasp however, is why we aren’t further along in the digital realm. Why isn’t there more ‘real’ hacking for diabetes. Why do we have so many institutional, cultural, corporate or regulatory hurdles that are preventing faster progress to a more digitally meaningful world? Why have we failed to see the progress in health care that we have seen in every other sector of our lives and economy with the digital revolution. Everybody says it’s coming. They’ve been saying that for a while. But if you’re living with it, it isn’t coming fast enough.
And it isn’t just medical devices. We now have lots of data sources, stored in pockets and silos across the country, which could help illuminate important patterns in care and outcomes in diabetes and so many other diseases, both chronic and terminal. It could, but it isn’t. Too few people have access to the data, and those that do are clinging to it with an odd and sinister sense of ownership, hiding behind issues like privacy as a way of explaining their decision to keep it from researchers who could use it to make innovative discoveries.
The reasons we have failed to see progress in digital health are not technological. They’re political – corporate politics, industry turf battles and a reluctance on the part of policymakers to force – or ‘incentivize’ – companies to do the right thing for patients.
These are the areas that I “hack”. With this blog, I hope to highlight those – like me – who are hacking their way to better health. We need solutions now. We know many of the tools we need are possible, so we’re building them. We’re tired of hearing the hype about the promise of digital health. it’s time for that promise to be realized. The only way to get there is to hack our way to the future we want. We are not waiting anymore.
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. In addition, she serves as Chief Advocate for Participatory Research at the Scripps Translational Science Institute, working with STSI researchers to develop new ways of involving patients, caregivers and physicians in the design of clinical research using digital and genomic health tools.
Anna’s passion for innovation in health data analytics, participatory research and digital health tools is rooted in her personal experiences living with type 1 diabetes. In her professional and personal activities, Anna seeks to build platforms for better understanding of and engagement with the needs of patients. She speaks frequently about the need for innovation in medical device data and technology, promoting data standards, device interoperability and user platforms aimed at empowering patients to better manage their health.
As a health IT entrepreneur and patient advocate, Anna has been appointed to and served on a number of government and private committees and boards aimed at promoting innovative ways to better understand, manage and treat complex chronic health conditions, such as diabetes. She was a member of the the ONC HIT Policy Committee’s FDASIA Workgroup, charged with advising the government on a regulatory pathway for HIT that would protect patients and promote innovation.
Anna’s work as an advocate and entrepreneur has been featured in an array of publications and online media, including Forbes, Huffington Post and US News & World Report. She was named by XX In Health as a “Woman to Watch” at Health Datapalooza 2013, and as co-founder of Galileo Analytics, was one of a select group of innovators invited to participate in “The Hive” at TEDMED 2013.