Just after my 10th birthday, in 1995, I was diagnosed with type 1 diabetes. I lived in a rural coal town in southeastern Ohio at the time. The resources available to my pediatrician and even the local hospital were barely enough to stabilize my ketoacidosis. After I was released, I started the struggle of trying to keep a complete medical record that could be taken with me to each of my different physicians. My dad is a coal miner, as we moved from town to town to follow the coal seam, we had to get printouts from each of my doctors and specialists to add to the file and take to the next doctor. Inevitably, trying to manage reams of paperwork and keep instructions from various physicians in order got difficult.
In 1997, I ended up back in the ICU with diabetic ketoacidosis. None of the physicians "trusted" my reams of paperwork about my prescribed insulin doses and lab results. So I had to be stuck over and over and start from scratch titrating my insulin. While I was never hospitalized again for my diabetes, that experience showed me that even with all of that paperwork I was going to have repeat testing and almost start my care all over each time I switched physicians.
Shortly after that hospital stay, I began falling asleep at completely inappropriate times and in inappropriate places. My physicians attributed this to fluctuations in my blood sugar. I wasn't convinced. Around the time I was in nursing school the EMR wave started to crest in coal country. When my physicians started using an EMR and could graph and trend my blood sugars they saw that the "sleep attacks" were not related to changes in my blood sugar. But they still maintained that maybe something was happening between the times I checked my blood sugar that would account for my hyper somnolence.
I also ran into a problem where my PCP and endocrinologist couldn't coordinate their care plan and I was getting different direction from each physician. Being in nursing school helped me be able to see the gaps and work with each physician to make sure we were all on the same page. After becoming a practicing nurse, I realized that this trait in patients is very rare. Most patients would follow the newest instructions instead of a combination of all of the instructions.
I moved into the HIT space in 2008 with the goal of helping people avoid the problems I had been experiencing since childhood. I wanted to help stop the duplicate blood draws and scans, I wanted to stop patients from having to carry folders full of medical records that the physician may or may not read and mostly I wanted to stop the gaps in diagnosing and treating disease.
During my time in the HIT space I worked to build and implement and EMR and through this work finally found a doctor that looked through all of my records and ordered a sleep study. We discovered that I am narcoleptic and I was put on medication. It took far too long and far too many swallowing studies, MRIs, scopes, lab tests and follow-up appointments to reach that diagnosis. Shortly after this change in my health, I realized that the real reform in healthcare can be made by providing physicians and patients access to a complete medical record, aggregated from trusted sources at the time it is needed. I began working on this facet of HIT from within the payer industry.
To illustrate the difference our blood sweat and tears has made to HIT, I will tell you about my son. He was born premature at 27 weeks in 2013. This came with a slew of associated health problems. Through the use of HIT, he has been able to avoid a single duplicate test or procedure and his care plan and health history has always been aggregated, up to date and available to all of his physicians and myself as his caregiver. Communication with his physicians is simple through the use of their patient portals and I have not had to print and bring a single record from one physician to another. Granted I make sure to keep all of his physicians within the same EMR instance in order to do this, but it is still a huge deal! I am so proud of how far HIT has come since I was young and feel so blessed that my son won't have to deal with those same struggles. We still have work to do but, look how far we have come!