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The importance of healthcare interoperability and continuity of care in our personal lives

by Lisa Johnson, Senior Leader

On this Labor Day weekend, as we celebrate American workers and their achievements, I think of my dad, a hard-working farm boy and mechanic. I traveled across the country recently to visit him and my family over my summer vacation.

During my short stay, it became apparent to me that something was not quite right with my dad’s health. He was showing signs of short-term memory loss, physical coordination issues, and overall confusion and anxiety. At 70 years of age, my father has no medications and no significant medical history to speak of. He has done rigorous physical work his entire life, so this was very unexpected and came on so suddenly.

An unexpected diagnosis for my dad

My sister and I worked quickly to have our father evaluated by his primary care physician. His doctor referred him to a neurologist to get a brain MRI immediately. We learned devastating news from there; Our dad had a large brain tumor that was causing significant pressure and fluid build-up on his brain. We were referred to a neurosurgeon who scheduled brain surgery for my dad right away.

That detection occurred a few weeks ago, yet it seems many months have passed since then due to all of my dad’s medical visits and our continual worries about his health. He is home now recovering from surgery with a clean tumor resection. His pathology results came back with a diagnosis we were praying would not come to fruition; He has GBM stage 4 brain cancer. It is a fast-growing brain cancer with no cure. We will rally around him to help manage his quality of life and buy more time with radiation and chemotherapy. This is going to be a marathon of engaging with the healthcare team to support my dad to make the end of his journey on earth with us the best it can possibly be.

Non-existent health information exchange makes emotional times more of a challenge

This journey made me reflect more deeply about the value of what we do at Community Technologies for the communities we serve. We provide a digital foundation that improves interoperability. Though we had great doctors for my father in his region, the provider-to-provider coordination and patient-family experience there was less than stellar. Despite my clinical background in healthcare and an understanding of how to guide the navigation of care for my dad, we had to maneuver through a fragmented mess constantly, always working to be one step ahead.

My dad’s patient navigator asked what was most important to us. We indicated it was assistance with continuity of care between primary care, neurologist, and neurosurgeon. I shared that transitions of care didn’t happen for my beloved mother four years ago. Our experience then was subpar at best. I wanted better care for my dad than what my mom endured. The navigator noted to me that they could send paper records via postal mail to the physician and neurologist. However, if I wanted the neurosurgeon to reach out to me by phone, I would have to make a request because the healthcare information exchange (HIE) and/or interoperability was not in place there. Unfortunately, HIE is almost non-existent throughout many areas in the U.S.

The bottom line

For medical centers without interoperability, the bottom line up front is this:

Even under emotional strain, it is up to patients or their loved ones to make sure healthcare providers are on the same page to help facilitate provider-to-provider and/or provider-to-patient communication. This is due to the lack of digital tools at some medical centers.

Although my father was admitted to a state-of-the-art cancer hospital, it didn’t have an electronic health record system in place. The nurses and patient navigator noted there is little continuity between the inpatient and outpatient sides of the house. There should be one electronic health record (EHR) for each patient with an HIE in place during this digital age. However, even in a highly populated city, this wasn’t the case. They continued to ask us the SAME questions over and over even after repeatedly replying that it should be in the record. In spite of being under emotional strain, the visits seemed more about the hospital workers checking their boxes for their own administrative gain and less about my dad’s care.

The absence of EHR to EHR carried on post-surgery

Staff at the center, noted the best in its region, referred in-home physical and occupational therapy for my dad post-surgery. They were supposed to send his records to the therapists so that they knew how to treat my dad. When his PT arrived, she had the wrong primary care information for him and limited access to his medical history. We went through an hour of intake again to bring her up to speed and the assessment took 10 minutes. My dad received zero value from that visit.

It’s a full-time job for our family to advocate for my dad and ensure everyone is on the same page so that he can receive excellent care as all patients should. It’s disappointing to be in this field and experience little improvement in digital healthcare over the last five years. Care coordination and patient engagement seems to be viewed as a “nicety,” but not a necessity. We can all do so much better in this area!

Shared digital technologies help build healthier communities

As providers of electronic healthcare records among caregivers, patients and those authorized, the extension of digital healthcare technology that Community Technologies offers to its community partners is a large part of a long-term solution. We offer digital platforms, which are essential for exemplary healthcare and needed everywhere every day. Our services help medical partners provide exceptional care, ease stress, provide transparency for enhanced continuity of care, and save time. These services for optimal care can mean saving many more lives. We will continue to deepen our work in the eight states we currently serve and aim to broadening our reach of service to other regions. Expansion of our service to other regions will enable us to help many more healthcare providers, so in turn, they can better serve those in need of care in their communities.

So this Labor Day weekend, I hope that, like me, you take a moment to honor and celebrate the essential workers who work tirelessly, especially during this pandemic, from the hard-working laborers like my dad who help bring nutritious food onto our tables and keep our planes, trucks and cars in working order, to healthcare workers who provide the most optimal health care that they possibly can.

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