The Burdens of Chronic Disease
The stories of individuals and families struggling with COVID-19 are heart-wrenching – the crushing symptoms, the daily anxiety, the toll on families, not to mention the financial impact. This virus has the ability to wreak havoc and does so in blitzkrieg like fashion, anywhere from 3 days to 14 days following exposure.
Now, just for a second, imagine having to deal with a life-threatening illness every day for the rest of your life. A disease that can cause crushing symptoms, invoke anxiety, take a toll on families and is potentially crippling financially. This is life with a chronic disease.
Chronic diseases are the leading cause of death and disability. For patients and their families, the personal toll is staggering. For a healthcare system, they are the most expensive to treat. In order to make a meaningful contribution to the management of chronic disease, Healthcare companies need to better understand the key burdens affecting patients and their families.
A needs-based framework can serve as a guide in the identification and development of new technologies, services and/or solutions. The framework consists of identifying elements related to four specific types of burden associated with chronic disease:
1) First, there is the physical burden associated with the management of the disease. As an example, imagine one of your greatest fears in life is the physical pain associated with an injection with a hypodermic needle. It is estimated that this phobia is a top-ten American fear and affects 1 in roughly every 7 Americans. Now imagine this is the only way you can receive a life-saving drug to manage an illness that you have. Take it one step further and imagine you need to deal with this pain every single day. This is just one example of a physical burden associated with a chronic disease.
2) Next, there is the emotional burden associated with the management of the disease. In the previous example, you can imagine the emotional burden that goes along with the physical burden of dealing with the pain of a needle. But, if that’s not enough, imagine the terrifying anxiety associated with questions about whether having a certain disease means you are going to live or die, or, as a parent, wondering if your child, who is living with a chronic disease, is going to be ok while at school both physically and mentally. These burdens are real and a major source of stress for patients and their loved ones.
3) Financial burden is always a significant challenge in chronic disease management. By its very definition, a disease that lasts a long period of time is going to exact a significant financial toll – to both the patient and the healthcare system. One doesn’t need to look too far in today’s headlines to find the passion and outrage associated with drugs that cost over $10,000 or the rising costs of insulin. And, in the United States, as deductibles and out-of-pocket costs for patients grow higher and higher, this burden becomes more and more real for patients and their families.
4) Finally, chronic disease creates a significant cognitive burden for those attempting to manage it. Chronic care is different from acute care in a number of significantly different ways. Very generally, acute care happens in the hospital or urgent care facility whereas chronic care management happens largely in the home. The primary care giver in an acute care situation is the doctor. While obviously the doctor plays a pivotal role in chronic disease management, it is most often the patient themselves, or their care partners (family member, loved ones, etc.) who are responsible for delivering care. These differences are significant – significant enough to create real cognitive burden for the patient and their care partners. “My blood sugar is 280 mg/DL and I am going to go for a run, how much insulin should I give myself?” The answer here requires a fast and deep lesson in, among other things, math, science, and chemistry. Patients or their care partners who deal with the management of chronic disease can make literally hundreds of these decisions each week and, sadly, the data suggests that making the right decision happens too infrequently.
This brings us back to healthcare companies. In order to successfully develop solutions that help with the management of chronic disease, a company must first catalogue the specific patient need associated with each of these burdens, prioritize them with respect to their level of importance to the patient and their care team, and then attempt to develop solutions to address these challenges. This process can be involved and includes a number of different steps and techniques, including but not limited to, conjoint analysis, ethnography and observational research. However, with this understanding a company can begin to prioritize its R&D investment in a way to systematically solve for the biggest problems their patients are facing.
Chronic diseases are insidious. To manage them is incredibly challenging, with patients and their care partners playing a central role. As a result, physical, emotional, financial and cognitive burdens represent real struggles that must be addressed if a meaningful difference is to be made. The companies who will win are those who can obtain a deep understanding of which of these burdens are the most important for their customers and then, in turn, systematically convert that understanding into products and solutions that alleviate these burdens in differentiated ways.