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The Hoops Patients Jump Through | Savvy Cooperative | #AskPatients

I was speaking at a Patient Experience Conference two weeks ago. After some background and framing, I did an exercise where I asked the audience to turn to their neighbors and discuss what went into a patient being able to take a prescription medication. Depending on your background, you might call this a supply chain or a journey map.

The goal of this exercise was to get the audience to understand all the juggling a patient does in order to be “compliant” with their treatment.

Because of the biases of the audience, the first things I heard were about how a drug has to go through clinical trials: Phase I, then Phase II, etc. Eventually they started talking about what motivated a patient to seek medical care in the first place; then finding the right doctor, getting the right diagnosis, finding the right treatment. They were starting to see the bigger picture, but then it can almost seem too big. We need to dive in deeper to understand each part in greater detail in order to understand how to improve the process.

Zoom in

With the audience, I fast forwarded through the drug development process, the decision to get help, the diagnosis, and even the failing other treatments. I asked them to imagine that the patient already has a medication that works for them to treat their particular diagnosis, they just have to pick it up and take it. What could go wrong?

What seems so simple, can be wildly challenging.

One possible scenario:

The person is behind picking up their prescription because the pharmacy closes before they get out of work and can pick their child up from childcare. When they do go they’re told their medication isn’t covered. They can’t afford to pay out of pocket, so they have to wait till it gets sorted out. They work all day so don’t have time to call their insurance provider during business hours. Finally when they do, the are told their employer switched plans and that that medication is no longer covered. They call their doctor‘s office, but have to wait for a call back to discuss the situation. They may ask others in the patient community if anyone has advise, someone may suggest a copay assistance program. They may be interested, but don’t have time to look into it. Meanwhile, their condition flares, it impacts their work, family and mental health…

The story could go on and on. And for many patients, it does. This is the reality of the patient experience. And it’s messed up.

The opportunity

The good news is, if we take the time to really work with patients and learn what they go through, we have a much clearer understanding of their pain points and ways to fix them.

I go to a lot of conferences and hear people talk about how they want to improve the patient experience, but few give take aways how to do so.

Savvy Coop provides a way for companies and innovators to connect with patients and learn from them. If you’re not sure where to start, there are design agencies trained to help you! Need a recommendation? Ask us!

Check this out

I am looking forward to HXD 2018, the Health Experience Design Conference, June 26–27, in Boston. This conference brings together leaders in design, innovation, research and technology to discuss actionable ways to better serving patients.

We will be there with our Savvy Puppets acting out what patients go through. We hope you’ll submit your own Messed Up Patient Experience for us to share so we can raise awareness of the challenges patients face.

Check out Rose’s story below

And submit yours here.


Savvy Cooperative is a co-op, co-owned by diverse patients, people with disability and other helpful citizens. Savvy gives people a platform to share their experiences living with health conditions or navigating the health system so that together we can accelerate change.

Jen Horonjeff
Post by Jen Horonjeff
June 18, 2018
Jen Horonjeff, PhD, is a life-long autoimmune disease patient and brain tumor survivor turned human factors engineer, academic, FDA advisor, and now the founder & CEO of Savvy Cooperative.