Have Patient Data — Won’t Travel

Ken Congdon

My personal realization of the frustrating lack of communication and information sharing among providers in the U.S. healthcare system began back in 2003. At the time, I was living in a suburb just south of Pittsburgh and I started to experience what I thought was a bad urinary tract infection.

My first stop was a nearby Urgent Care Center. The physician there ordered a urinalysis. When that came back negative, he checked my prostate and ran some STD tests. Everything came back clean, but as a precaution, he put me on a two-week course of antibiotics and sent me home.

The pain and symptoms didn’t go away. In fact, they got worse. I called the physician at the Urgent Care Center and he referred me to a nearby Urologist. This specialist ordered the same batch of tests the Urgent Care physician did, which produced the exact same results. His diagnosis? Chronic prostatitis (even though my prostate wasn’t inflamed and my prostate fluids all tested clean). He prescribed an even longer course of even stronger antibiotics that produced the exact same result: no improvement.

After a couple months of being unresponsive to this treatment, the Urologist ordered a series of additional tests. Blood was drawn. Images were taken. Scopes were inserted into the most sensitive of areas. Guess what? Everything came back normal once again. The Urologist in Pittsburgh stuck by his original chronic prostatitis diagnosis and ordered an additional course of antibiotics.

My symptoms never went away. The pain and burning were constant. Sometimes it was just mildly irritating. Other times, it was close to unbearable.

During this period, a career change caused me to relocate from Pittsburgh to Erie, PA. Unfortunately, I didn’t leave the pain in the Burgh. It traveled with me to Erie, but my patient data didn’t.

Upon arrival in my new home, I started to see an Erie-based Urologist and started the process of communicating my symptoms to him all over again. He began to order the same series of tests I had already been through in Pittsburgh.

“I’ve had all these tests performed already,” I said. “Can’t you just get this data from my old Urologist in Pittsburgh?”

“No,” he said. “Our offices likely use different information and imaging systems, so I probably wouldn’t be able to read the data. Plus, I like to run my own tests to ensure they’re done correctly.” (Sure you do. Plus, you can charge for each service you order too. Why pass up easy revenue?)

So, once again blood was drawn, images were taken and scopes were inserted into the most sensitive of areas. Guess what? The results were exactly the same. All test showed that there was nothing wrong with me. But, still the pain persisted.

This cycle continued itself for more than a decade. My original Urologist in Erie finally said he couldn’t help me and I went to see another. This new Urologist ran the same battery of tests (yet again), which produced the same results. This doctor had the idea that maybe my symptoms weren’t related to my urinary tract at all but was referred pain from a colorectal disorder.

He referred me to a colorectal doctor who I had to explain my symptoms to (yet again) and he ran a different battery of tests. Blood was drawn. Different images were taken. Scopes were inserted into different, but equally sensitive, areas. Still, all tests came back negative.

It was frustrating enough to have to live with the pain for which no doctor could find a cause. It was even more frustrating when some physicians told me the pain was likely all in my head. However, perhaps the most frustrating thing of all was having to repeat my story over and over and over again for every doctor I saw and having the same battery of uncomfortable tests performed countless times.

None of the doctors I saw ever spoke to one another or shared any of my prior medical tests of information. My medical history became fractured, siloed episodes that remained in the possession of the physician’s offices in which they were conducted. Each time I saw a different doctor, I was back at square one —forced to start the whole process over again. This disconnected, repetitive and inefficient healthcare environment is at complete odds with the best interests and well-being of patients. There has to be a better way, and health IT needs to play a key role.

This personal medical journey has galvanized my passion for helping educate healthcare providers to build open technology systems and infrastructures that enable easier information sharing while allowing patients to ultimately own their healthcare data. EHRs, Enterprise Content Management (ECM) and Enterprise Imaging (EI) technology will be key components of this infrastructure, but we still have a long way to go.

My story has a happy ending. My wife finally convinced me to travel two hours west to Cleveland Clinic (a provider outside of our health insurance network at the time). The doctors there diagnosed me with Pelvic Floor Dysfunction (PSD) —a condition that’s rare in men my age and one that never would have shown up on any of the numerous duplicate tests I endured over the years. After more than a decade of physical and mental suffering, I’m pleased to say that through periodic physical therapy and daily at-home exercises, I’m now mostly pain-free. The condition wasn’t one I psychosomatically manifested after all.

While my journey ended well, the long, torturous road I took to get there should never have happened. Unfortunately, not much has changed in the 14 years that have passed since my journey began. Today, patients across the country are enduring the very same repetitive narratives, paperwork, and tests that I experienced. And, as such, they’re experiencing very similar frustrations.

The healthcare industry has made some progress in regards to capturing and sharing information via EHRs, but much of this data is still incomplete and incapable of being shared outside of the healthcare network in which it resides. We need to continue to make strides to create interoperable networks that allow all of a patient’s valuable data to travel with them from provider to provider. I hope with every passing National Health IT Week that we continue to get closer to that goal.