(Photo via twitter.com/TJUHospital)
Telemedicine is having a moment right now.
Flattening the curve has forced patients with chronic illness to access healthcare from home — both for their protection and to free up resources at medical facilities. As a lifelong cystic fibrosis patient and diabetes patient since 2014, this has meant for me putting off appointments, switching all medication to mail-order, and using telemedicine portals to reach out to my doctor.
Despite these changes, little has truly changed in the management of my disease. My doctor appointments pre-COVID-19 had become best practices more than a vital part of my care because I communicate with my doctors via email and even text when I need their advice, and often gets a response within hours. The lung function and vital signs tests they run at their office I can do at home, allowing me to monitor trends better than quarterly appointments ever could. A good portion of my meds were already delivered via mail-order pharmacies. Delivery by my local pharmacy was an option that they advertised for many months before COVID-19 struck.
In many ways, my reliance on technology for day-to-day chronic disease management has been growing over the years. COVID-19 only forced that trend to accelerate.
This trend toward telemedicine describes a wide spectrum of medical services. Many institutions including my CF clinic at Jefferson Health communicate with patients over an online patient portal. Many insurance companies offer low-cost or zero-cost consultations with a doctor by phone. Along those lines, virtual urgent care websites that quickly connect you with a doctor have been around for decades. More recently, websites like Hims, Roman and Wisp (where I work as product lead) have increased accessibility for patients in specific disease states by offering telemedicine experiences that feel more consumer than medical. These examples all fall within the scope of “telemedicine” but offer very different experiences, few of which, from my perspective as a chronic disease patient and as a technologist, fully realize the promise of what telemedicine truly offers patients.
To understand the promise of telemedicine, it’s worth understanding the distinction that using the word telemedicine creates on its own. When I was working at Calcium, a small pharma marketing agency in center city, as lead of digital strategy, I remarked to the chief strategy officer that the word “digital” in my role would eventually be superfluous. As digital becomes the primary means in which we communicate, digital strategy simply becomes strategy.
We are witnessing this distinction between the telemedicine way of doing medicine and the traditional brick-and-mortar way of doing medicine lose relevance.
I feel the same way about the “tele” part of telemedicine — which is already laughably dated. “Tele” refers to telephones. Phone are now computers and computers are now phones. While working from home, we may switch between our computer and our phone to take calls throughout the day. Functionally, computers and phones do the same thing nowadays, just in different forms.
In the same way, we are witnessing this distinction between the “telemedicine” way of doing medicine and the traditional brick-and-mortar way of doing medicine lose relevance.
Does it matter that you and your doctor are sitting in the same room when you’re discussing health data collected using your phone and a treatment plan that could be delivered by mail? Soon enough, making the distinction between medicine facilitated by technology vs. medicine facilitated by brick-and-mortar facilities will make little sense — instead, they will mix together and become just a better way to do medicine.
There are, of course, always barriers to such changes. (Steve Jobs’ greatest accomplishment in launching the iPhone may not have been the device itself, but the famous deal he struck with AT&T. Culturally, he had to change the way an industry leader viewed and sold phones — not a small task.) To understand the scale of cultural change that telemedicine demands within medicine, you only need to walk a few blocks in any direction in Center City Philadelphia. Everywhere you look in Philadelphia a major medical institution’s logo is on the side of an enormous building: Jefferson, Penn Medicine, Drexel Medicine, Children’s Hospital of Philadelphia and the now shuttered Hahnemann Hotel (as us CFers liked to refer to it!). Enormous buildings and sprawling campuses.
Medical institutions don’t build medical facilities so that their doctors can telecommute and their patients can jump on Zoom to discuss their health problems. Buildings are where doctors work face-to-face with their patients. Doctors do their residency rotations in these buildings. They learn medicine in these buildings. These buildings are literal cornerstones of medicine. The concept of telemedicine can feel foreign and difficult to trust in comparison. Patients and physicians connecting within brick-and-mortar buildings vs. over electronic communications is a big cultural shift, but it’s a cultural shift we’re all adapting to across many industries during this pandemic.
When you are experiencing a medical emergency as many are today, you could not be more thankful for those giant medical buildings full of smart doctors, selfless nurses and cutting-edge technology. I spent so many cumulative months, maybe years, inside of St. Christopher’s Hospital that when I’m on Amtrak traveling between 30th Street Station and New York, I look forward to catching a glimpse of that burgundy trimmed hospital building in North Philly. It feels to me like driving by my childhood home.
That being said, despite all the time I spent inside the walls of healthcare buildings, and despite the numerous times that the nurses, doctors and modern medical machines no doubt saved my life, the most important health decisions I made as a patient were nearly all made at home. Patient adherence to therapy at home is far more important than anything that happens inside a hospital building. Doctors can prescribe miracle treatments, but if the patient doesn’t adhere to the treatment plan when they get home, then health outcomes suffer.
You, just like me, may be a victim of bad genetics, but you are still ultimately responsible for your own health, and nobody else can take that responsibility for you. For me, this means a total of six breathing treatments by nebulizer every day; at least four insulin injections every day; constant monitoring of blood sugars; hopping on an exercise bike for 15 to 60 minutes per day at odd hours to stave off insulin resistance; taking a 50+ pills per day that need to be timed around meals and 12-hour intervals; weighing food and counting carbs every meal; planning showers, exercise and even work around insulin dosing; ordering meds and sterilizing medical devices; among many other little things.
The amount of overhead involved in managing chronic disease is absolutely staggering. It’s little wonder that many patients feel defeated and often don’t adhere to their prescribed treatment plan. I have felt that feeling at times throughout my life. The payoff is that I’m alive today with 95% lung function, <7% A1C, normal BMI, living a relatively normal life despite a very bad prognosis early in life. Those numbers don’t happen without putting in the work. Good outcomes require unwavering dedication to control your disease. Control begins with taking responsibility at home.
It’s hard to take responsibility for your disease without some basic patient education. Talk to any community physician or pharmacist, they’ll tell you stories about how badly patients lack basic education about their disease. My favorite story about patient education is a diabetes patient who called their doctor and said, “The insulin you gave me doesn’t work!” New diabetes patients practice their injections on a citrus fruit such as an orange to simulate human skin. The patient said, “I did exactly what you told me! I’ve been injecting it into all my food, but it’s just not working!” Insulin must be injected into your skin, not your food, to work properly.
Patient education is hard. Thanks to technology, though, it can happen anywhere. During my time spent at Digitas Health doing SEO for pharma clients, I researched what patients searched on Google across hundreds of disease states. I would construct keyword search journeys showing how patients navigate their chronic condition. Patients turn to Google to educate themselves in large numbers.
We’ve all done it. We all educate ourselves on WebMD and other health websites not because we don’t respect the advice of healthcare professionals, but because everything is at stake for us personally when our health is threatened. We can’t just hope that a generic treatment plan prescribed during a 20-minute appointment and tested on a large patient population will work. It doesn’t matter that a treatment works for 80% of patients if you’re in the 20%.
Technology can enable open, two-way lines of communication with your doctor like never before.
Every patient is different and needs to understand their own body and their own disease in order to control it. The easy access to health information over the internet is putting more control in the hands of patients — at a very low cost. There is much more to be done in telemedicine to educate patients and help them apply disease concepts to their specific cases, but this trend helps patients take more responsibility for their health, and creates better outcomes.
As a chronic disease patient you learn over time that doctors, for all their years of schooling, are limited in their understanding of your specific disease, how it affects your body, and how to treat your specific case. The best doctors — and I’m blessed to have been seen by the absolute best — are humble enough to admit as much. Treating chronic disease is a team sport. You, the patient, must educate yourself to understand your body in a clinically relevant way. You have to have open and two-way communication with your doctor so that they can listen to you and apply their knowledge and experience to your disease.
Technology, again, can enable these open, two-way lines of communication like never before. Social distancing means we all are maintaining close relationships at a distance using technology. Technology can increase the frequency, timeliness and quality of communications between patient and provider to create better outcomes.
Lastly, telemedicine presents an enormous opportunity to use the increasing volumes of data created by personal health devices. Back in 2012, I began using a cheap spirometer to measure lung function. Today I have an oximeter to measure oxygen saturation, a scale that measures body fat, a blood pressure cuff, an Apple Watch to detect Heart Rate Variability (among other measurements), as well as a Continuous Glucose Monitor to measure blood sugars every five minutes. I can detect daily, hourly and even up-to-the-minute trends in my health with these devices.
If the line of communication with healthcare providers is open, then chronic disease patients can catch and discuss problems before those issues cause significant harm. I often send an email to my doctor if I see a change in my data and receive a response within hours. Inversely, if communication with your doctor requires an appointment weeks in advance, and that appointment only lasts 20 minutes, the data won’t be relevant and there may not be time to make sense of it during the appointment. The power of personal health data is lost if it’s not being considered by healthcare providers in a timely fashion.
Disease doesn’t wait until your next doctor’s appointment to strike. Even before COVID-19, a chronic disease patient could go from sore throat, to shortness of breath, to needing to be hospitalized within days. I’ve been there. You never think it can happen that fast, but it does. There are often signs you failed to pay attention to weeks or months in advance.
The way to stave off a health crisis as a chronic disease patient is to educate yourself, monitor yourself daily at home, and maintain open communication with your healthcare providers. By embracing technology’s role in chronic disease, we will not only overcome this COVID-19 pandemic, but also improve health outcomes over the long term.
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