By Steve Van, Patient Advocate
Going to your doctor is something that we have all done at one time or another, whether you have a chronic disease or not. For most of my appointments, I’ve often felt like we were not communicating on the same level, we weren’t on the same page. I attended the appointment, expecting him to have the magical answer to all of my problems that would make sense to me, but in reality, I played no part in this process. I gave him my health to resolve and hoped he would provide me with the perfect solution to fix this.
I would talk about my issues related to diabetes and how I was feeling, and in return, my doctor would talk about my test results and my A1c level. After considerable thought – and a long period of miscommunication with my care team – I realized that I was speaking patient and he was speaking doctor. Reconciling these two very different languages was not a simple task, and took many steps to get there.
I speak patient, they speak doctor
I, as a patient, tend to speak in terms of how I feel and the actions I was taking to keep my blood glucose levels down to the prescribed levels. I spoke from a subjective point of view, explaining how my disease was affecting my health and my quality of life, in an attempt to portray my issues so that he could provide solutions. But after each meeting, I felt as if he couldn’t hear what I was saying; that all he wanted to know, and needed to know, was the details of my daily routines for eating, exercising, and rest – not how they impacted me. All of these routines, I could either describe without much detail, or I would give my best guess. I was talking patient, sharing my subjective experiences with a summary of information.
On the other side, my doctor spoke in terms of data: my lab results, my weight , my intake or nutrition in caloric values. He had information in my charts, but wanted to know these details from me about my life outside the doctor’s office – and I had no hard answers for him. At this point, we never connected. My doctor needed to have data in order to accurately prescribe a medical solution for me, and I was only able to tell him how the disease and my activities were impacting me personally. As a result, he would provide the prescriptions for my diabetes based only on the data he had available to him at this time, and the small amount of color my explanations added to that information. It was not until I was part of a study that tracked my data in detail did the conversation begin to change.
The study, the bridge to a new dialogue.
In 2016, I joined a study where I used a connected blood glucose meter, scale, blood pressure meter, and wearable to track my health data and submit it remotely, in real time, to my care team. In return, my providers tracked my blood glucose every time I took it, which was four to six times a day, along with the other information I was sharing with them. The data was uploaded to a system where my care providers could see it and better understand my behavior. This was the data that my doctor needed to better treat my diabetes. He had the whole movie reel of my life, not just the in-office snapshot of my health data. My doctor spent time reviewing the data with me in detail during our appointments; and then, something changed.
Though this was data that I was already collecting everyday, and data that would help my providers better understand my health, the difference was that they were, for the first time, able to receive that data on a regular basis. It gave us a connection outside the doctor’s office and offered more detail to describe my daily routines.
The bridge: data is a dialogue.
Though he spoke doctor and I spoke patient, together, we spoke data. We moved from a simple discussion, which was often riddled with misunderstanding, to a dialogue: a true exchange of ideas using the data. This was data that both of us were able to see, day in and day out. Each time we met, we began to look at the data – not just subjective descriptions of how I felt. We were able to look at the data in detail – together – and understand the impact of my behavior in a way that helped me make changes to my daily routine, one step at a time, to have a positive effect on my diabetes. We were able to see the times of the day that I was in target and out of target with my blood glucose readings. I could not see this before the study, because I did not have this detailed information – I had only been able to see one-time readings without a comparison to my other data in the past. With this information, I could see where my challenge times were and how carbs played a big role in the increase in blood glucose. There was now a one-to-one correlation between the high blood sugars and the subsequent health consequences that I could not see in the past. This key shift put the power of choice in my hands. I was able to take ownership of my health by making choices with the power of data – not by guessing.
Data as the new medium
My doctor and I changed how we communicate with and to one another. In the past, I would talk patient and he would talk doctor. Now we talked data! We have a new medium in which we use to communicate. A blood glucose of 120 to me is the same as 120 to my doctor. This is information we could both access and understand. Now when I meet with my doctor, the first thing we do is to review my PGHD.
New medium, new process.
This new medium presented a new opportunity to enhance, if not completely change, the way we communicated with each other. Instead of the monologue from my doctor that lacked true understanding between the two of us, we began to have a dialogue, an exchange of ideas and a language in which to process those ideas.
The patient and the doctor have roles to play
My experience is that the communication that occurs between doctor and patient can improve the overall health of the patient – when both parties are involved in a partnership and bring information and data to the conversation. The doctor already has data provided by labs, blood pressure and temperature taken at the appointment, along with any other data they may collect. This is the data the doctor brings to the table; but without more context, it can be difficult for the patient to understand what the data means in daily life.
So, equally important is the data that the patient can bring to the appointment, such as regular food, blood pressure, blood glucose logs and activity. On one hand, this gives the doctor more information as to what is happening daily in this patients life and on the other hand, this helps the patient provide critical input to the session that can help enhance the patient’s health outcome. As a bonus, this helps the patient become closer to the data, and improves his or her fundamental understanding of what these numbers mean and how they make them feel. Moreover, the patient can begin to own their condition, rather than relying solely on the provider to manage it. We no longer hand our health over to our doctors; we begin to own our health and share the responsibility.
PGHD is the key to driving communication
What I have come to learn as a result was amazing and very informative. The more detailed, informative data regarding my blood glucose that I could bring to my doctor, the better he could treat my diabetes. The same was true with my heart; the more quantitative information I could offer, the better my doctor could care for my chronic heart condition.
This was another “Ah-ha” moment for me. The more I thought about who these doctors are at their core, the more I could see that they are scientists of medicine. I had never looked that them in this way. Doctors have been trained – and rightfully so – to use data as the basis of their understanding of the science. The data is what I carry around within me everyday, and the science is understanding how the data affects me. The more limited the data, the more limited the understanding of me. PGHD was, and is, the bridge between the doctor and the patient to help communicate the data that represents the dynamic changes affecting the patient as they live their daily life.
One shift of view can change your life
Over the course of the study, and up to the last minute of writing this blog, I have made a shift that changed my life – that motivates me to capture my PGHD daily in every way possible. This one shift, from using solely a quarterly A1c test to sharing my daily health data with my doctor, has many rewards. I reduced my A1c by two points. My energy level is much higher during the day and I have significantly lowered my overall weight. I’m able to dedicate my time more effectively to my family and my job, instead of dwelling on uncertainties regarding my health. What was invisible to my doctor in the past was my daily data and what was impossible for me in the past was to lower my A1c. In this new partnership, my doctor was able to see the invisible and I was able to do what I thought was the impossible.
This partnership brings full circle to the philosophy, “Those that can see the invisible can do the impossible.”
All of these rewards are driven by data that I have always had but couldn’t see before. Equally significant, I have a much better understanding of my health, and as result, I can drive the positive results by better management with data I understand. I no longer just give my health to my doctor and expect him to fix me with a pill or shot; we work as partners in my health, and as partners, we both own the results.
The fundamental shift is more than just collecting data: it is having a partner that truly understands my health and equally, my new ability to understand and manage my health. A shift in view can change your life. Can you make the shift? Dive in – the water is warm.
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.