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Patient Access: Putting My Binder Back on the Shelf

I have a chronic illness. During my diagnosis process, from 2012 to 2014, I carried a four-inch binder to all my doctors’ appointments because none of the specialists I visited communicated with each other or shared records. I had to be the single source of truth for my own medical information; otherwise, tests were unnecessarily repeated and my medical bills spun out of control. When appointments concluded, I would call to request a paper copy of the visit record, pick it up from the office, and add it to my binder. An incredible amount of work was involved in creating my binder. I made sure it was easy to flip through and organized logically. I even created cover sheets to provide doctors with a brief overview of what changed in my condition and if I had any new tests done. This all demanded a great deal of time and energy. My binder became a full-time second job. My life revolved around managing my health care, rather than living as a previously very active 22-year-old.

When I was finally diagnosed with Ankylosing Spondylitis, an aggressive form of inflammatory arthritis that causes the vertebrae of the spine to fuse together, it initially came as a relief despite there being no known cure. 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 exhaustive recordkeeping was about to unfold.

With my diagnosis came a lot of different medications and a lot of trial and error. I think we (meaning my doctors and I) must have tried eight different NSAIDs before we found one that worked even a little bit. Then, we moved on to more intense medications that involved weekly injections and refrigeration. Through all of this, I maintained a list of medications that I had tried and which failed to provide any relief. This was invaluable when my first rheumatologist passed away and my second rheumatologist retired. I learned to be just as prepared for doctors’ visits as I am for meetings at work. That kind of preparation resulted in better outcomes for myself, and I felt more in control of my health care. For instance, finding a new doctor was a fairly easy process because I had all my health information in my binder. My binder was a powerful tool in my treatment process, and I was in control of it.

Before I got sick, I couldn’t even remember the last time I used a binder and a three-hole punch. We no longer print things, punch holes into them and put them into binders. We use digital applications to replace so many paper processes. Yet, there I was, lugging around 10 pounds of paper with me to every doctor’s visit. With the medical system so far behind the times, the market yearns for innovation. It’s no wonder Amazon, Google and Apple all want to get into the game.

Interoperability is the key component for allowing data to flow freely and for patients to say goodbye to their burdensome, outdated binders. Now, through CommonWell Health Alliance, patients have the ability to access and download their medical records from the participating EHR vendors that power the record systems at their doctors’ offices. I am one of the lucky patients who has already experienced and gained value from the success of the CommonWell network and its person-centered approach.

The first time I was able to access my data through CommonWell, a sense of relief came over me. I clicked a button, and within minutes, I had a record waiting for me. It was a large document from my primary care physician who uses athenahealth. The document contained information going all the way back to 2014, when I first started seeing him. It contained 82 lab results, records of all my immunizations, all my medications that I was currently taking and had taken in the past; and a list of all my conditions, allergies and even my vitals. It was incredible and reassuring to see all this data flow into the right hands, and I could feel the power it contained. What used to take hours of phone calls, trips to doctors’ offices, and lots of paper, happened in just minutes as I watched on my laptop’s screen.

By bringing EHR vendors and other health IT stakeholders together to enable health data exchange, CommonWell has broken down huge barriers that existed previously. CommonWell Health Alliance has created a strong network that enables new tools and services, like OneRecord, to empower patients as they navigate the health care delivery system – and for that, I am thankful.

Morgan Knochel is CTO and Co-founder of OneRecord. OneRecord is a patient centric platform that automatically retrieves and consolidates all of a patient’s medical records, and puts them in control of their medical data. OneRecord has been a CommonWell member since 2017.

To see CommonWell services in action, visit us at Nationwide Care Transitions in the HIMSS18 Interoperability Showcase, where OneRecord will join six fellow CommonWell members in demonstrating how providers and patients nationwide are gaining value from the CommonWell network.

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