Patient Engagement I

Patient-Researchers and Physician-Consultants Confront Chronic Disease

Article · January 20, 2017

I consider myself a digital health native.

For most of the past 30 years, I’ve been using digital tools and data-generating devices to make daily, often hourly, decisions about how much of a potentially fatal drug I should administer. That drug, insulin, keeps me alive. But get the dosage wrong by even the smallest of amounts, and there are very real and immediate consequences. Best-case scenario: You might tank your afternoon meeting or do poorly on that big algebra test. Worst-case scenario: you’re dead or disabled — an all-too-frequent occurrence among those of us with Type 1 diabetes.

Because of the demands of managing insulin, the role of my physicians has changed dramatically. Once, they were the source of all knowledge and guidance. Now, I consider my physicians to be consultants. They play a critical role in enabling me to manage my diabetes. But, like it or not, I am the executive in charge of maintaining my health and managing my disease.

The responsibility for dosing my insulin rests on me, because it must. Neither my doctor nor I have much choice in the matter. The “same dose every day” insulin regimen is largely — and fortunately — a thing of the past. Most of us who use insulin to stay alive make the decision many times a day about how much we need and when, based on our own measurements, understanding, and experience of life with the disease. Our doctors give us guidance, and we may go to diabetes educators to receive training and advice. But the day-in, day-out decisions are all on us, the diabetes patients.

Anybody reading this who knows anything about type 1 diabetes shouldn’t be surprised. Since the introduction of home glucose meters in 1983, responsible physicians have encouraged and empowered patients to accept and embrace this reality. As personal use devices have become more sophisticated and insulin has improved, this trend has escalated, and many patients are living safer, longer, less restrained lives as a result.

For me, though, disease management doesn’t stop with insulin. After decades of life with difficult-to-control diabetes, I have an array of complications — eye, kidney, and nerve disease — as well as a few common comorbid conditions to help make things more interesting. To manage this, I take 14 different medications. To help keep these medications appropriately tuned, I use an array of other devices in addition to my diabetes devices that provide critical data about everything from blood pressure and hydration to weight, body fat, activity, sleep, and energy.

If my digital scale indicates I’m dehydrated, I’ll likely cut my diuretic dosage in half that day, helping me to avert the inevitable dizziness, neuropathic pain, and continuous glucose monitor (CGM) reading errors that result from dehydration. Later in the day, if I’m better hydrated and my blood pressure goes up as a result, I know to take the rest of that day’s dose. If my resting heart rate goes too high, I might cut back on that day’s caffeine. If my sleep or activity patterns change, it might mean I neglected to take my anemia drug or that it could be time for an iron infusion.

If these data- and life-informed actions don’t right the patterns, I call one of my expert consultants. That can be my endocrinologist, nephrologist, or cardiologist. Armed with the data and an informed sense of what has or hasn’t changed, I can markedly improve my consultation with my physician. Our discussion is far more productive, and it’s that much easier for my doctor to work with me to identify the necessary action.

This is the future of chronic disease management.

A few years ago, I would have said that diabetes patients were different from patients with other conditions — the combined danger of insulin and the development of digital tools put diabetes patients squarely, and uniquely, in charge.

Today, though, many more of our chronic disease–afflicted comrades are following in the path of diabetes patients. The digitally informed patient tribe is growing, as sensors and trackers of various types proliferate. The list of at-home, personal use devices is expanding in ways that are both exciting and daunting. We’re already seeing some promising applications for these new tools and sensors, but it will take patients, physicians, and the health care industry a while to figure out what much of this data output means and, importantly, what actions it might inform.

Diabetes patients have had nearly 35 years of experience of living with data. Yet we’re still learning new and valuable insights, developing a keen sense of what the patterns mean, then circulating our discoveries directly to other patients. These “N of 1” patient-researchers are completely bypassing the standard clinical research process, sharing their findings immediately and helping fellow patients look for solutions. I suspect this trend will be replicated in other disease communities as more patients become immersed in new, emerging data streams. And if diabetes is a guide post, in due time, those “findings” will make their way to clinical researchers who can begin the process of developing a protocol, securing funding, and conducting the studies to see if these personal findings are valid and applicable for a broader patient population.

When I give presentations or sit on panels discussing these issues, a lot of people like to call me an outlier. They say I am unusually engaged and involved in managing my care. I understand their point, but if they’re right, there are a lot of outliers in the type 1 diabetes community. None of us chose this path, but for most of us, the promise that a cure is around the corner has grown stale. We can always hope, but for now we are thankful for the tools and treatments we have that enable us to make data-driven decisions about how to stay alive. Each of us is a living, breathing, N of 1 researcher, a participant, and a clinician. Our physicians are there to help, but decisions about how we care for our own life-long illness is both our responsibility and opportunity.

 

This article originally appeared in NEJM Catalyst on March 10, 2016.

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