By Steve Van, Patient Advocate

Healthcare, meet me where I live my life, not where you live yours.

Over and over again, I see the healthcare system and its surrounding support structure continue to proclaim that I have to fit into a mold, to be the standard type II diabetic patient to receive your care, as you continue to proclaim that you can heal me.  

The way the system is designed now requires that I must come to your office, be treated in your office, and then, if I have any issue with the treatment after I leave your office, I must return to your office to be seen, and then treated again there. I covered this topic in detail in an earlier blog, but it is worth mentioning to highlight that this is one of several elements of care which is in conflict with how I – and many other patients – live.

When I come to the doctor’s office for treatment as a diabetic, they can only see a snapshot of my life – not the full movie reel showing how I live. If my provider had a continuous view of my life by leveraging the data that I collect and generate daily, and could diagnose and treat me based on that, I am confident they could offer more comprehensive, effective care for the daily management of my disease.

To do this, though, we need better, more up-to-date systems and tools to help us connect where we live – our homes, our offices, and our wider environments – rather than within the confines of a doctor’s office.

The standard today is  that I, as the patient, come to your office so that you can review my condition. But, I cannot live my life inside your office with you watching my every move and those infrequent touch points do not help me manage my condition on a daily basis.

I spend a minuscule amount of my life in the doctor’s office; it’s unreasonable to expect that the information gleaned exclusively during those appointments is representative of my larger health and wellbeing in my daily life. However, if you could review the daily rise and fall of my glucose, based on time of day, food intake, stress, exercise, sleep and more, I am confident that you would be able to offer more effective intervention and treatment. This would require that my doctor have access to, and use, patient-generated health data (PGHD) that I capture daily and update as part of my routine.

Unfortunately, there is an assumption in healthcare today that, patients are not interested or willing to use tools that gather PGHD and share that data with their care providers. This assumption provides a clear image of the disconnect between patients and providers.

To me, this assumption is hurtful and diminishing. Firstly, it implies that myself and other patients are not capable of using this technology. Secondly, it suggests that we would not be interested in or willing to  use an alternative form of treatment for better health. And, lastly, it reduces the role, voice, and value of the patient as a stakeholder in his or her care. This perhaps best illustrates the clear disconnect between what providers see as the abilities and willingness of patients, and what is actually true about patients’ willingness to take steps to improve health.

Almost everyone today has a smartphone; just look around you right now and see how many people have a smartphone in hand. We live on our smartphones. They are with us at all times of the day and night. Most people have them by their side when they brush their teeth in the morning, when they eat breakfast, when they drive to work or school, when they are in their office, at their desk, in the classroom, at the store, at the gym, at the dinner table, and on the nightstand when they go to bed. They are with us all the time. As such, it should seem obvious that patients are able to use this technology – which is already integrated into their routines and lives – to track their health, and it would be convenient to do so.

My Drive to Use Technology

The idea that patients won’t use technology also assumes that I would not put in the work to learn a new behavioral pattern to improve my health. Think about it this way: as consumers today, we seldom use cash for our daily purchases, but instead we use electronic debit cards or credit cards that we slip into a chip reader. At some point, we all learned to use these cards because we knew it would make our lives simpler. As a consumer of healthcare services, I should have the option to share my PGHD electronically with my care provider similarly. The technology is already available, and once I learned to use it, it made my life easier and made a bigger impact on the state of my health. Why wouldn’t I take advantage of that? Why wouldn’t I want all patients to have the opportunity to take advantage of that? Would you learn how to use the technology if your quality of life depended on it?  

Try to remember the worst cold or flu you have had in your life, and how you felt at that time. What would you have done to feel better?  Would you be complacent with feeling ill indefinitely, or would you take steps to get rid of the cold if you knew it could work?

Well, that is the way I feel when I have a bad day with diabetes.  And yes, I would do the work to deliver my PGHD to my doctor so that he and I could work together to help me better manage my diabetes. However, I do not have the option.  

The only option which most health providers offer today are printed out spreadsheets or documents with tables to manually track this data. Can you imagine taking out a paper spreadsheet and trying to log your insulin dose and/or food intake during a lunch with your team at work or with your three kids and trying to manage their meal, too?

The solution is a phone app in which I can enter the data and the app uploads that data to the provider’s system for me. A seamless system that works for the user, me, and for them. Most of my care providers also want better solutions for the patient to bring their data. But post-it notes, handwritten forms or spreadsheets to plow through adds an unsustainable workload. In addition, every frontline provider I have discussed this with fully supports this new technology being integrated into care.  

Dependency on the Doctor’s Office

Another key barrier preventing me from leveraging this technology to improve my health is that I am only able to receive care within the confines of a doctor’s office. Meanwhile, the technology that powers PGHD lives with me wherever I am, and because of this incredible technology, I can share my condition with you for review and guidance at any time, anywhere.  

Whereas, with healthcare today, my care is reliant on traditional, in-clinic model of care. For years, I come in to have my a1c reviewed, to adjust my medication, and to provide an anecdotal overview of my quality of life (which really depends on the week or day I visit the doctor). I was told to improve my diet, which I thought I was, and to become more active (which I didn’t know how to fit into my life or what actions were most effective). The cycle of this wore me down over the years and my condition worsened as a result. It became difficult to motivate myself to even go to the doctor’s office when I wasn’t seeing or feeling the return.

I, and millions of patients, don’t have a way today to bring healthcare into our lives – into our homes, our routines, our families or communities. We go into the hospital to receive care or treatment or diagnosis, but we don’t have a way to bring those home with us. As a result, we can remain disengaged because we don’t know how to heal beyond prescriptions and ambiguous suggestions for lifestyle changes. Overtime, this can lead patients to feel hopeless about their health and, understandably, their conditions worsen.

Ultimately, many of the struggles I face within the healthcare system is that the leaders seem to be largely disconnected from the real, everyday patient experience. It’s not that we patients are unable or unwilling to receive care; it’s that the care offered to us is inaccessible and removed from the realities of living everyday with a chronic disease.

Managing Diabetes in a Disconnected System

Let’s consider this model specifically in terms of diabetic care and support. Currently, my doctor prescribes a specific type of diet for all diabetics like myself: low carbohydrates, low sugar. So, when I leave the doctors office, I try that diet and hope I’m doing it right for the next three months until I return for my quarterly A1c test – only to find I’ve made no progress. During this time, I’m reliant on friends, Google, and web forums to help guide me, but really every experience is different, and sometimes what works for Sally or Joe doesn’t translate to the way my condition affects me.

Then, my doctor sends me to a nutritionist to learn how to eat – after 50 years of certain eating habits that I’m accustomed to. I am instructed to look at sample plastic food that looks nothing like the food I eat. Then they give me charts, diagrams, lists of food to eat – pamphlets which I’m unlikely to have on me 24/7. And, I’m expected to exclusively eat the food on the chart, and the one hypothetical conversation with a nutritionist is thought to instantly improve my eating habits. This model is not meeting me where or how I live; it expects me to meet the medical system where they are.

I have been advised and even prescribed by some of my past care teams to follow an Atkins diet, paleo diet, low carb diet, and on and on and on. If I don’t follow the diet or routine in detail and return with a lower a1c, I have failed. Or have I? Have I failed because I could not change my lifestyle or 50+ years of programming, giving up cultural routines of eating with family, friends, workmates – consuming the food that we consider the bridge to our relationships? And, even if I am able to make sustainable changes, tracking them is still a burden.  I’m not able to leverage my smartphone, which I already use almost hourly, to collect and submit my health data? There is a large disconnect here between the expectations of providers and the needs of patients.

Letting Technology Be the Connection

What I have found to be successful is my ability to understand what I eat and how I live by sharing that data with my care providers and getting direct feedback on how to manage and alter my choices for a better outcome. My data allowed my care team to educate me on my habits and my condition. Most of us will try to make the change to the prescribed diet and it will work for a while, but at one point or another, you will find that the real world intervenes in following said rules. However, if you’re getting consistent feedback reminding you of the positive or negative actions being taken, you’re getting the support you need to understand what a healthy choice is, and how to integrate this into an existing lifestyle and daily routine.

I found success in lowering my a1c by sharing PGHD in real time with my care team and getting feedback based on real data. For me, this was much more informative than my a1c, which only explained the result of my overall behavior, not the impact of individual actions. My PGHD describes my behavior; I have it with me all the time, just like my disease.  

Although healthcare is focused on healing and treating patients, it is ultimately still adhering to a format that does not fit with the lives of patients today. With technology integrated in all other parts of our lives at all times, why can we not leverage these tools in our care? Here is where we see the patient-provider disconnect: a miscommunication of what patients need and what providers provide.

So much of our diet, lifestyle and, therefore, behavior has to do with who we are as people within our own culture, region, country or origin, race, religion and on. The top down structure of the current system does not work for all of us – providers must leverage the tools patients use today to meet us where we are and offer truly meaningful care.


Steve Van was diagnosed with type II diabetes at age 40, like his father, uncle, and grandmothers before him. After struggling for decades to manage his condition and subsequent ailments like atrial flutter, Steve joined a pilot program which used home health devices and wearables to connect his biometric and routine data – that he was generating each day – to his care team in real-time. This program helped Steve’s team identify a negative habit and intervene for sustained behavior change, leading to a major improvement in his health. After losing more than fifty pounds and lowering his a1c by nearly 2 points, Steve now advocates for the use of patient-generated health data to help patients better understand and manage their condition. Connect with Steve on Twitter.

Missed Steve’s last blog? Check it out here.

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