Guest Post by Steve Van, Patient Advocate

As a patient managing a chronic disease, I have had plenty of experience navigating the healthcare system. Since I was diagnosed with type II diabetes over a decade ago, I’ve experienced many different sides of healthcare and health management, whether that be struggling to balance my blood sugar levels independently or having breakthroughs during conversations with my physician. For years of my life, connecting with my healthcare providers was a challenge; I didn’t understand their thinking, and they didn’t understand my behaviors or how my body reacted to their treatments.

As such, when I look at the big picture of medical care, I see three main focuses:

  1.    Diagnosing the problem/condition
  2.   Treatment of the problem/condition
  3.    Care for the problem/condition

Each one of these stages represent the critical components that add up to the overall care, and resulting outcomes, of the patient. In my experience, every interaction or decision made alongside your care team and for the sake of improving your health can fall into one of these categories. Successful completion of each stage is vital to a healthy conclusion, or healthy condition management, as a patient.  

Let’s take a look at each stage in greater detail to better understand the overall process that impacts so many of us on a daily basis. An understanding of this process offers better clarity and insight to the overall system.  

Step one: diagnosis.

When I have a medical issue, large or small, eventually, I head off to the doctor to find out what’s going on and what can be done to resolve the problem. Let’s call this step the diagnosing stage – step one of the overall process. I meet with my doctor, I tell her about my symptoms, and she listens to get a full understanding of my problem. She performs an exam, then could request some tests or labs and then, almost always, makes her final diagnoses. We are all familiar with this stage, whether it be for something minor and temporary, like the flu, or the discovery of a larger health issue. For me, this stage is on one hand difficult, because you have to share your condition with another person which is in some cases very personal.  On the other hand, now that I’ve shared information with my doctor, the next steps are in her hands and I can stop googling my problem and worrying excessively.

Step one, diagnosis, completed. I have a diagnosis of my medical condition and my doctor moves me into step two: treatment.

Step two: treatment.  

This next step is largely my doctor’s responsibility – to develop a treatment plan for my condition which might include medication or some type of therapy. And, it’s my responsibility to adhere to this plan. Depending on the severity or permanence of the condition with which you’ve been diagnosed, this could be as simple as a few days of rest, a week of antibiotics, or as strenuous as a lifetime of rigorous daily management. You might return to your doctor for a couple of additional visits, and hopefully, you won’t need to see them for that particular issue again.

These next couple of follow-up visits are what I consider the care for your condition, an additional tactic of the treatment stage to ensure that said treatment is effective. Once you and your provider determine that the treatment was effective, and that your health issue is no longer an issue, the care for the condition can come to an end. Ideally, in due time, and if you follow the prescribed treatment, you can get back to living your life healthily. Mission accomplished!

However, what if my diagnosis determines that I have chronic condition? A chronic condition is a human health condition or disease that is persistent or otherwise long-lasting in its effects or a disease that comes with time. If that’s the case, the mission continues.

Balancing the healthcare journey with chronic care management

For me, “chronic” means that I have an ongoing disease that has no current, permanent cure. No pill, no shot, no procedure can cure me – instead, I must turn to chronic care management. My next question is, how do I manage this chronic condition? How do I keep this disease under control and live a healthy life?  Where is the user guide for diabetes that I can use to stay healthy? This is where those of us who manage chronic diseases must add additional steps to care delivery. For us, it’s not so simple.

I am told that for a person with type 2 diabetes, the answer is just to eat better and exercise more.  

Is that really the entire user guide to managing my condition as a diabetic? For us patients with chronic conditions, the “care” stage –which follows the “treatment” stage – has very few practical tools to use in our daily life. From my interactions and experiences, suffice to say the “care” phase in our healthcare system provides the fewest number of tools, the least amount medical interaction with the staff, and very little technical support. Patients like myself with chronic conditions are most often left without the necessary means to manage our health.

Step three: chronic care.

The medical care system is very good at these three basic steps of the process – that is, diagnosis, treatment, and care until issues are resolved – for most short-term conditions. However, the story is a little different when it comes to the care for chronic conditions like diabetes. How do I manage my disease while getting ongoing care, feedback and guidance? How do I track my health successfully, without ending up back at steps one and two of the healthcare process?  For me and most diabetics, it comes down to the quarterly lab test named A1c.

Your A1c is a numeric value of your average blood glucose over the past three months. For most diabetics, the goal is to have an A1c of seven or lower.  Every doctor that has treated me for diabetes has generally offered the same, seemingly straightforward advice. “Get your A1c to seven or below!” My view of the test results is pass or fail. Under seven = pass, over seven = fail.

After going to the lab, I attend my scheduled return visit with my doctor; if my A1c is over seven, she will tell me to eat more leafy greens and vegetables, exercise more, and remember – no added sugar in the diet.

So now, my doctor has told me what to do, but how do I know how to do it?  How do I follow my doctor’s orders to make the right decisions throughout my daily life? I feel like it all makes sense when I am in her office.  At that time, it’s easy to say, “sure doc, I’ll do that and things will be much better when I see you in three months after I get a passing score on my A1c.”  

My experience is that when I am in my doctors office, I am in treatment, in which she will alter my medications, perform an examination, and review my test results with me, all to determine the condition or position of my chronic disease and its possible progression. But, the moment I walk out of her office, I enter the care phase.

Imagine walking from San Francisco to New York in the fog, by yourself, with no support. You need guidance to get to your destination. As you’re standing in the fog, you’re left wondering: where is my GPS that I can follow road by road so I can arrive in New York, not Vancouver?  Patients with chronic diseases need better tools for guidance and more accessible support on a regular basis – not just every three months – to arrive safely and healthily at our destination.  

The tools offered to diabetics for making better food choices are paper packets centered around carbohydrates. Am I to take that list with me everywhere and pull it out at the store when shopping? If I sit down with a diabetic educator, they show me plastic food. Am I expected to visualize these examples when I am out to dinner with family? In reality, patients aren’t able to incorporate these archaic tools into modern, daily life. They’re the same tools presented to me twenty years ago when I first became a diabetic – and they didn’t work then, either.

Today, the majority of the U.S. population has a smartphone they carry with them everywhere, every day. The healthcare system has an opportunity to use these ubiquitous devices as a platform to track my health and capture my patient-generated health data (PGHD). Let’s put the tools on my phone so that I can send my daily data to my care team. Let’s implement the clinical systems to provide me with direct and timely feedback on my food choices and blood sugar values along with the other PGHD I collect.  

If I could share the information I collect daily and get direct feedback about the choices, good or bad, I can better manage my condition. For every meal, I use the best of my abilities to ensure my food choices are the right option. But what if I could share my choices along the way with my care team? They could present alternates to poor choices or provide positive feedback. Currently, these are the decisions I make independent of my doctor, using only those basic instructions to eat more leafy greens or think back to the mental picture of plastic foods.

I have come to consider the third stage, “care,” critical in its impact on a patient’s long-term health. If I have a chronic disease and I do not manage my condition well, I will eventually regress to the treatment stage – and potentially back to the diagnosis stage, if my condition management is so poor that it results in side effects or additional conditions.  

Chronic conditions are never ending. You have this with you every minute, of every hour, of every day, of every week, of every year for the rest of your life.  What I have come to learn is the importance of managing my disease every minute of every hour of every day – and that I need to do this for the rest of my life.

So, now the question becomes, how do I manage my disease, and how do I make it fit into my everyday lifestyle? If there is no cure and I can only manage my condition, where is the “how-to” process for me to do it effectively?

Care is the third leg of this three-legged stool and must be equally as strong as the other legs to provide the most support for those with chronic conditions. What this third leg is missing is this “how-to” for the patient. Give us the tools and the guidance to act in partnership with our care providers. Healthcare must partner with patients and support the ongoing process to sustain good health.

Stay tuned for Steve Van’s next post, where he will discuss his healthcare experience, and how remote care provided him an opportunity to improve his health in a truly interactive, supportive manner.

 

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 and depression, 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.

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