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As someone with a complicated chronic illness, it’s incredibly difficult to organize my healthcare.
During my diagnosis process, from 2012 to 2014, I carried a two-inch binder to all of my appointments since none of the specialists I visited talked to each other or shared records. I had to be the single source of truth for my own medical information. When appointments concluded, I would call to request a paper copy of the visit record; subsequently, picking it up from the office and adding it to my binder.
An incredible amount of work was involved in creating my binder; it demanded a great deal of time and energy that could have been spent doing things I enjoyed and living my life. My life had evolved into managing my healthcare, rather than living the active life I had before.
When I was finally diagnosed with Ankylosing Spondylitis, it initially came as a relief. After two years of travelling from doctor to doctor, I was grateful to be able to put a name to the pain that had been plaguing me for so long. What I didn’t realize, though, is that a whole new period of recordkeeping was about to unfold.
With my diagnosis came a lot of different medications and tons of trial and error. I think we must have tried eight NSAIDs before we found one that worked even minimally. Next, we moved on to more intense medications that involved injections and infusions. Through all of this, I maintained a list of medications that I had tried, but had failed. This list became invaluable when my first rheumatologist passed away and my second rheumatologist retired. Because I had maintained all of my healthcare data, chronicling the successes and failures of various treatments throughout the years, finding and onboarding a new pilot for my healthcare journey was a lot easier.
Given the way interoperability is advancing, I hope that the burden of aggregating and organizing a patient’s data will no longer fall on the patient’s shoulders. Patients should be focused on healing and getting better, not doing clerical work.
Health IT should be making things easier not just for providers, but for patients, too. Patient portals were the first step in making things simpler for patients. However, patients often see providers that are in different health systems, forcing them to log in to multiple portals to obtain their records.
With the advent of C-CDAs and now FHIR, the ability to get discrete data elements from clinical data provides the health IT community incredible power to make things even easier for patients. We can now pursue data analysis, population health, personalized medicine and so much more.
The next step in the journey towards true interoperability is granting this same power to the patients. Patients deserve to manage their own information: to access, aggregate, analyze and share it with whoever they desire.
It’s time we put this power where it belongs: in the patients’ hands.
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