The Grateful Patient: Experiencing Healthcare from Both Sides

#IHeartHIT, our yearlong storytelling initiative, helps shine a light on the human side of health information and technology and the impact it can have on the health and wellness of every person, everywhere. Read one story below and consider sharing yours.

In the spirit of National Health IT Week, I share my story with you, not only so that you may understand my passion for this industry but to also serve as a reminder that your own commitments to changing the healthcare landscape are appreciated beyond words.

September 26, 2016, both marks the beginning of National Health IT week and my birthday. Bear with me! I’ll explain to you the significance of my photo as well as my birthdate. In November of this year I will be undergoing chemotherapy and a subsequent Hematopoietic Stem Cell Transplant (HSCT). During that time I will be shaving my head and so to minimize the shock of losing my hair, I decided to cut my locks a bit to get myself used to not having long hair. While today is my official birthday, November will represent my “rebirth.”

RELATED: Health IT: We’ve Come a Long Way but There’s Further To Go

But here’s where my story began ...

In 2008, months before I turned 25, I secured a job with a local health IT vendor. Having never before worked in the industry, I was nervous and yet excited about this new opportunity. As cliché as it sounds, it seemed like this opportunity was meant to be.

You see, just a few months earlier I had been diagnosed with multiple sclerosis. Prior to my diagnosis, I had been misdiagnosed twice, I’d had my paper medical records compromised on more than one occasion, I’d undergone redundant tests time and time again, and I sounded like a broken record as I told my story over and over again to clinicians. I was frustrated. I was upset. And I was angry. I couldn’t understand why Hospital A wasn’t talking to Hospital B and communicating what tests I’d already had done, I couldn’t wrap my head around the rollercoaster ride I unwillingly seemed to have been put on, and I couldn’t scream loud enough that I am more than a patient number; I’m a human-being.

Just like the frustrated clinicians and staff who work tirelessly to deliver patient care I, too, felt defeated at having to navigate a fragmented healthcare system. But I decided to use my experiences as a patient to turn that job opportunity into a lifelong career, igniting an unyielding passion. I decided I wouldn’t sit idly by rather I, along with many of you, would make a sizable difference in our industry... and we have!

That difference is evidenced in part by a visit to my primary care provider a couple of weeks ago in which I was able to update my information on a tablet with a friendly user interface or by the doctor that emailed me a secure link to access my health records, mitigating the need for phone calls and paper trails. As someone who now has trouble writing, I was elated at having been able to tap answers onto a screen! These may seem like small things but to a patient, they make a BIG difference.

I realize we still have a long way to go, but I’m pleased by the progress that’s been made through health information exchanges, seamless interoperability and great collaborations. So to you all, I want to say a big, hearty THANK YOU—not just as someone who works in this industry but as a grateful patient.

The views and opinions expressed in this blog or by commenters are those of the author and do not necessarily reflect the official policy or position of HIMSS or its affiliates.

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Originally published September 25, 2016, updated September 26, 2018