Thursday, August 5, 2010

Why I Advocate for Healthcare User Experience

Elizabeth Cohen's article today on Why I Write Empowered Patient (on, inspired me to write a story of my own. I will preface this with the fact that I have never been diagnosed with anything fatal or even life-threatening, but as anyone knows, when your body feels somehow less than normal, it affects all aspects of your life.

My story begins at age 10, in gym class. I tripped. I fell. And for the next 10 years I was on and off crutches, saw doctors too numerous to count and was even hospitalized once. What was wrong? To this day, I have no diagnosis. The best information we received was that it was structural and a pair of orthotics and some time would allow me to grow out of it. Meanwhile, I was poked and prodded. I felt like a lab rat, but I and my family wanted answers.

My concerned parents worked to get an answer for why their child, at age 10, could usually not run and sometimes not even walk around with other kids. I went through Disneyland in a wheelchair because it was too painful to walk more than a few blocks. I rode a Honda Spree between classes in college because I couldn't walk the short mileage between classes. (thankfully, it was super cool and turned many heads!) In college I was wrongly diagnosed with Rheumatoid Arthritis. I thought for sure that was a death sentence at the time. I was devastated.

In the years since, I have had many an undiagnosable illness/conditions, and some easily diagnosable. I have broken 2 bones and endured sinus headaches, migraines, anxiety issues, asthma a host of annoying, but never life-threatening illnesses. I've consulted western, eastern and all manner of doctors and health care practitioners, some with great success and others not so much.

Thankfully, now in my 40's I can hike, and do (despite actually breaking that ankle I twisted 30+ years ago) and have a reasonable handle on my health care (including a rebate from a botched bill over 12 months ago...)

I am as adamant as I can be about my health care but still wish:
1) I had insight to my medical records and history
2) I had a way to connect my various providers, both traditional and non, in-network and not
3) I did not have to fork out huge amounts of cash to handle my health care the way I want it handled with practitioners I know and trust - whether or not my insurance company deems them acceptable.
4) That people of any education level would be able to understand and manage their health care. The fact that we now need advocates for our care and to handle the massive billing snafus is simply ridiculous.

Of course, having said all this on the most public of forums...I am probably un-insurable with a long list of pre-existing conditions. But we all need to continue to stand up and ask for what we need. All of these experiences (and more) have led to the reason why third brain studio does a large amount of work making the patient and provider user experience the best it can be.

The patient experience is clouded by pain, discomfort, misunderstandings and a general lack of experience. The provider experience is clouded by a medical system that requires them to spend limited amounts of time with a patient, process endless amounts of paperwork and keep up with ever changing science and technology.

As we do our work, we hope to bring the patient and provider together, as a team, advocating for patients receiving better and more understandable health care and providers to be able to do their best work possible with the most support. Hopefully, this work is another bit or byte in the building of an empowered patient.