Guest Post by Steve Van, Patient Advocate
In my last post, I discussed the healthcare experience for a person with a chronic condition through my experiences. In summary, the healthcare system offers patients a three-step process, in which one receives a diagnosis, a treatment plan, and ultimately, care for their condition. However, that third step is what often poses the most difficult challenges. How can I manage my condition if I don’t receive the support, direction, and communication that I need to make the right decisions for my health?
I want to share a recent experience that changed my life as a person living with type II diabetes. I was diagnosed at age 40, and for years, I tried and tried to lower my A1c. After years of attempting to change my behavior and improve my lifestyle – following my doctor’s directions to eat better and exercise more – my condition and my health only stayed the same. Actually, over time, it worsened; I was gaining weight, and I was taking more insulin every year. I had to make a change.
I sought out other medical providers and programs – finally landing on one at a different health system that made the difference. I volunteered for a study that included testing a new system of capturing your health data, specifically for people with diabetes. In this study, I was asked to follow my current blood glucose testing process and add the usage of an application to capture my data and share it with my care team. The application allowed me to hold my smartphone camera over the screen of my blood glucose meter and the data would be digitized in real time. I would answer a few questions after the reading, like is this reading pre- or post-meal, and then the data would be sent to my care team automatically. I didn’t know it at the beginning, but this change would make all the difference.
What I experienced in this study was the ability to have my care providers 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 on how to improve my actions, in a way that my A1c could not.
This was a game changer for me; my care team could be more directly engaged with my condition and provide better guidance. This provided the “how-to” for managing my disease that I had been seeking – insights gleaned from the use of my health data directed what actions to take (or not take) to improve my condition. I was able to share my health status with my care team on an ongoing, continual basis.
Patient-generated health data (PGHD) is the tool I use in my daily life to keep me healthy and in the care stage – and to keep me from worsening and returning to the treatment stage. When I take my blood sugar test, as I do several times daily, I share this data with my care team. They view and digest that data, offering guidance that I incorporate into my daily life. For me, this is the “care” stage in its best form.
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 doing that could be increasing 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: using my data to guide my decisions of what to eat and what not to eat, in real time. 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 just 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.
PGHD’s Impact on Positive Behavior Change
In terms of my own personal use of the data, PGHD helps me understand how exercise can help me better manage my blood sugar levels. My care team has helped me interpret that data and make the right food choices, therefore lowering my blood glucose levels. This better management lowered the amount of insulin I needed to take daily. Less insulin and more controlled blood glucose levels throughout the day helped with overall daily fatigue. The final benefit was weight loss. For once, I was in control of my disease.
Using PGHD, I am able to set goals with my care team that are specific, measurable, attainable, realistic and timebound, which you may know as “SMART” goals. This is the “care” in healthcare that I have found successful and continue to use every day. 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.
One last benefit I gained from PGHD is behavioral change. By following the direct feedback from my care providers after they reviewed my data, I have changed my behavior moving forward. 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 the timely feedback that reinforces specific ways to change my behavior. 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 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.
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.