The first phase of the Health for America fellowship is called exploration. Much like the explorers of the 15th and 16th centuries we embarked into a new world of experiences, completing a diabetes simulation, interviewing stakeholders, listening to advances at the very forefront of technology and the unbelievable successes and strides being taken in developing countries. As I take a moment, before jumping into the ideation phase, to look over my shoulder at the journey thus far I can’t help but imagine how those explorers hundreds of years ago must have struggled to describe all the new experiences upon their return home.
Our team tried to synthesize and condense the lessons from the exploration phase into a single document, outlining major themes that would inform our designs moving forward. We had to cut most of the interesting stories we heard from patients and clinicians, we had to cut to the bare minimum of scientific articles, despite attending four different scientific conferences, we even had to cut some themes, rolling them into others and trying to be critical only including those that were important to our designs moving forward. After all of the information was distilled we still ended up with over 20 pages, as well as a separate infographic. I will try and walk through our themes here, condensing, but showing a small view of the whirlwind that has been the past 10 weeks.
The first thing that was striking about diabetes was the intergenerationality. We (Amanda) may have invented that word, but it perfectly conveys that diabetes is not just an acute illness, rather that diabetes intrudes into lives, touching entire families. Many of those living with diabetes are currently taking care of someone else who has diabetes, and likely will be taken care of later in life by someone with diabetes. These relationships are the foundation for the way many approach their diabetes. Oftentimes there is a sense of inevitability, of impending catastrophic health outcomes, that comes from seeing previous generations suffer similar health outcomes. Other times there is an underlying fear, whether it be of insulin therapy or negative health outcomes, passed on in the style of oral history from one generation to the next. Still others have educated and measured knowledge of the illness, but in taking care of those around them do not have time to take care of themselves. Although the burden often falls on the family, our team realized the help that a healthcare team could alleviate some of the burden of care by providing education and care resources.
Under-informed patients are more prone to negative health outcomes and informed patients are much better equipped to manage their chronic illness. This sentiment is common in medicine, education is incredibly important, however we found that diabetes does not have a linear path to education. Diet, exercise, mental health, medication are some of the larger topics that need to be managed in diabetes care. But more pressingly a patient needs to learn to check their blood glucose, to know what those numbers mean, administer medicine, and count carbs among other skills that are the backbone to proper management. Additionally diabetes often comes the need for lifestyle change, which takes enormous effort and, of course, education. Behavioral change models are created for a variety of situations, but the breadth of touch points that diabetes has on a life makes matching the models to the lives of people very difficult.
As quickly as we focused on education as a major point of friction we shifted to learning about the barriers to presenting that education. Chronic care model within hospital systems are both underequipped and overwhelmed by the demand for educational resources. Archaic reimbursement systems put maximums on educational spending as opposed to minimums, clinical inertia leads clinicians to over-medicate, lethargic hand-offs between clinicians often result in patients not seeing enough specialists. At its core the challenge of chronic care management is mapping the diverse needs of diabetes as a chronic illness onto a system that would prefer linearity. Most hospital systems are “married” to HbA1c values, with patients represented by a singular number, and drugs used as the primary method to lowering that number.
To compound all of the hurdles that must be overcome to treat someone with type 2 diabetes are the cultural boundaries. Health disparities, blaming those who develop diabetes and a culture rooted in fast food and soda all make an already very difficult situation even harder to navigate. Medicare only covers a few hours of education and the bare minimum technology required to manage diabetes, leading to the people who are at most risk for negative health outcomes having less help available.
There are many companies and hospital systems that are trying to solve these, and many other, problems. The next step for our team internally is to start laying out plans to overcome some of these barriers to care. If you would like to see our entire landscape analysis please contact the HFA team, or look on Facebook for a shorter summery.