Healthcare Loops Make Us Sick
The following is an article authored by Tina Park, a Founding Partner at Diagram and co-host of the health and design podcast Yah, No.
Have you ever called a customer service line with an automated list of options to choose from and after having listened to all the options (because the options have changed!) you select the one that you think is the one you need which then leads you to another set of options. And then after maneuvering through the maze of options you get automatically bounced back to the first list of options? Then ultimately you end up hitting zero or yelling “representative” into your phone hoping that you get to talk to a real person?
Now imagine that this happens with your health. It happens every day and unfortunately mostly to people of color and poor people.
Here’s a scenario:
You are a young Black adult on Medicaid with Type 1 Diabetes. Management of your health comes after full time school, a full time job, helping your parents care for your niece and nephew, and sleep. Based on what they “think” they know about you and your lifestyle, your doctor never brings up diabetes technology such as a continuous glucose monitor (CGM) or an insulin pump– 2 technologies that are proven to lower A1Cs and emotional stress.
If you’re lucky enough to know about these technologies, Medicaid won’t approve a request because they require 2 years of “good numbers” in order to issue you any technology. But in order to have good numbers you should be on a diabetes technology.
But you can’t get on the technology until you have good numbers. But you can’t have good numbers until you’re on a diabetes technology. And back again.
You are a Black adult living with Sickle Cell Disease. (Congratulations already, you’ve made it to adulthood which, due to a system that works against you, is further than many.)
You finally find care you can trust within the Medicaid system. You start to feel better. This leads you to getting a good job.
That job though gives you a different (supposedly better) insurance and you lose Medicaid. Now you have to find new providers, and while you’re trying to find an adult hematologist that manages and specializes in Sickle Cell (who are few and far between), you start to miss appointments.
Several missed appointments leads to getting sick. Getting sick leads to losing your job and then BAM — you’re right back in the system again.
Healthcare loops are making people sicker. They are prioritizing the system over the people, leading to lowered life expectancy. They perpetuate the problem of marginalized people receiving inferior care. They have to be stopped.
There are a multitude of reasons why these loops exist. A failed system. Poor training of providers.
These challenges are big and scary and they seem intractable. But people are working on them. As a designer in the healthcare field for over 15 years, I’ve seen countless bandages to these types of problems:
- Patient education material that helps people understand their options.
- Tools that help patients keep track of their blood glucose levels in easy ways and
- endless amounts of reminder apps (appointment reminders, medication reminders, exercise and stretching reminders, ad nauseum).
Because these efforts focus on individual problems, they do provide opportunities for success. But with efforts like these, the responsibility lands mostly on the patient’s shoulders (input data; read, sort, and analyze loads of information, own an expensive device with unlimited access to wifi). In addition, the problems with healthcare can rarely be isolated.
More often than not, the problems in healthcare are informed and influenced by multiple events and interconnected conditions surrounding them — the social determinants of health. If we want to truly see a problem in health, we cannot close the aperture on our lens; we have to widen it.
If we don’t, we fall into what the The Disabled List, a community that works toward redefining disability, would call a “fix it” approach. This reduces the problems of an experience that happens over time (minutes, hours or even months) across a variety of contexts (the doctor’s office, at home, in the car, at the airport) to a singular problem and fixes it. But this approach usually causes us to miss the big picture, leaving the true problems unsolved.
Healthcare design requires zooming out. Instead of viewing problems in isolation, healthcare design sees a sequence of behavioral touchpoints and asks good, hard, questions. It requires people working on these complicated problems to find solutions by using inclusive methods of co-creation.
It requires bringing together the stakeholders (like doctors and patients) and lowering hierarchical social structures in order to distribute power equitably. As designers we can create spaces to congregate — spaces that build trust and offer opportunities for reflection and creativity.
If you’re not employing these methods in your approach, the simplest questions to ask are: Why not? Are you perpetuating healthcare loops, or are you breaking them?