OCTOBER 16-18, 2019



October 17-19, 2018 | Boston, MA

The Patient Voice: Perspectives on the Value of Data-Driven Remote Monitoring Programs

Steve Van, a patient advocate who has been managing type 2 diabetes and hypertension for over a decade, discusses specifics about the operational and financial elements needed to support patient-generated health data (PGHD) in remote care.


I was diagnosed with type II diabetes at age 40, and for years, I tried and tried to lower my A1c. Yet, my A1c stayed the same, I was gaining weight, and I was taking more insulin every year. As a result, I also developed hypertension shortly after.


Despite constant doctor’s visits and meetings with nutritionists and care managers, I struggled to improve my condition. My care team and I had not found a successful way to communicate, and I faced difficulty in understanding how my individual actions could impact my health so significantly. I was trying to manage my daily experiences and decisions based solely on the results from my A1c test, which happened every three months and reflected only my retroactive behavior and health.


Adding data to my care management


I had to make a change, so I sought out other medical providers and finally landed on one at a different health system that made the difference. I volunteered for a study that included testing a new system for capturing your daily health data and utilizing as part of a diabetic care program. In this study, I was asked to follow my current blood glucose testing process and add capturing the reading with my iPhone. Through the program, I remotely submitted my blood glucose readings, blood pressure, weight, and activity through the wearables and connected health devices that I was already using. The data was sent to my care team, who could then interpret it in near-real time.


What I experienced in this program, was that for the first time, my care providers could obtain my blood glucose readings in near real-time, and in detail. The team was able to receive my updates and then provide direct feedback in a way that my A1c could not.


This was a game changer for me; my care team could more directly engage with me and provide better guidance on my condition – the “how-to” for managing my disease that I had been seeking. The “how-to” was, and is, the insights gleaned from the use of patient-generated health data (PGHD). I was able to share my health status with my care team on an ongoing basis. PGHD is the tool I use in my daily life to maintain an understanding about my health and manage my condition to the best of my ability.


How the data made the difference


Once I began sharing my data with my care team, they saw that my blood sugar levels increased between 8 and 10 p.m. most nights. The care team asked me what I was eating during this time frame that would increase my blood sugar.  I told them that during that time, my family and I would watch movies and all I was eating was a few handfuls of popcorn – a food I considered healthy. They informed me that popcorn is filled with sugar, and was the cause for the increase in blood sugar every night. This was my “ah-ha moment.”  While this was a seemingly simple change, their suggestion to cut out the popcorn made a huge difference. This was the “how-to” in action: guiding my decisions of what to eat and what not to eat, in real time, based on my data. This new user guide to managing my daily choices and activities was beginning to work.


I sent my data regularly to my care team, they reviewed the data, and as a result, they were able to see what was affecting my blood glucose levels throughout the day. This was the detail I needed: a 10-foot view, not the 30,000-foot view that my quarterly A1c test offered. Over time, the care team was able to help me in many different ways - now that they had information to provide clear guidance for better blood glucose management.


Using PGHD, I am able to set goals with my care team for my activity levels, my nutrition, and my subsequent blood glucose readings and weight. I am able to get direct feedback from my team to keep me on track with my daily goals on a continuous basis. I can manage my daily activities more consistently and I am better able to stay within the prescribed guidelines for my condition.


As a result of reviewing my own health data, communicating with my care team, and understanding the impact of my daily life choices in terms of food and exercise, my use of PGHD helped me to create meaningful behavioral change. I no longer make poor choices because the data are able to show me the effects of the choices I make, and what the better alternatives are. I don’t wait three months. I get timely feedback that reinforces and sustains my behavioral change. And, the positive feedback from my care team motivates me to keep learning and making the best choices for my health.  


When I have the tools to live within the prescribed guidelines and when I get regular, direct feedback, I can learn to change my behavior. I can change my health outcomes based on communication with my providers when they evaluate my data.


The disease no longer manages me – I manage my disease.


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