When we in the industry discuss the concept of interoperability, we are most often talking about it from the perspective of a healthcare organization. We want the data that we collect to be visible, actionable and presented in context. We analyze the needs of the hospital, the clinics, the lab, the billing office, the federal programs that need reports run. We build connections in an effort to move closer and closer to the elusive “one source of truth” for clinical data.
We rarely, if ever, talk to patients about their data needs.
Patients—especially those living with chronic illness –are the super-users of our healthcare system. Their lives and their care often cross multiple healthcare organizations and software platforms. What is the most common and most effective method for patients to share their records with their entire care team? It’s usually a tote bag—filled with CDs of images and physical papers collected over time.
My sister is a healthcare super-user. When she first received word that she had stage IV lung cancer and was planning a trip from her hometown to a cancer center for a second opinion, she called me. “They want me to bring a CD of my images with me. They told me to not even ask the imaging people to send it because it could get lost and it was more reliable if I carry it myself. What year is this?” she asked. This was just the beginning of her collection.
My sister receives top-notch care. She is seen at a leading cancer center and her treatment through a precision medicine clinical trial has literally added years to her life. I have no doubt that all of the “backstage” technology that her treatment relies on is phenomenal. On the other hand, when she is on vacation and has to stop in a minute clinic; she is the person tasked with providing that new provider all of her relevant health information.
“I am my own medical record—and that scares me sometimes because I am not the most reliable reporter,” she said. For my sister there is no such thing as “one source of truth.” She has records at three major cancer centers, three local hospitals, three specialists’ offices (not cancer-related), her primary care provider’s office and two pharmacy systems. She keeps track of her clinical trial meds on an app, but needs to transcribe all of that data onto paper before she submits it to her providers.
Her diagnosis made her eligible for Medicare, and when her coverage came up for review she needed to fill out forms with information about discrete healthcare tests that she received and when she received them. She had to spend hours scouring multiple patient portals and billing statements to figure out when and where she had a specific test. She said, “If anyone should know when I had a specific test, you would think that it would be my insurance carrier—I mean, they paid for it.”
Managing her health, attending follow up appointments, getting tests and scans, dealing with bills, tracking data and trying to find data adds up to a part-time job for my sister. On top of being a parent, a Ph.D. candidate, living with cancer and the side effects of treatment, my sister spends on average eight hours a week on her healthcare.
Even as we push interoperability and integration, our focus is on what happens within the walls of the healthcare organization. The future of interoperability is not about getting your patient to stay where their data is—it is going to be about the data following the patient. The one source of truth should not be what one hospital system records; nor should it be what the patient can recall during a time of high stress.
It is time to look at the informatics needs of the patient as a person and a consumer. If we put the patients at the center of healthcare, it will be truly transformative. It might even give them some time back to enjoy the things that will sustain them through the next health crisis.
Galen Healthcare Solutions is a professional services and solutions company providing IT consulting services, including strategy, optimization, data migration, project management and interoperability for specialty practices, hospitals, health information exchanges, health systems and integrated delivery networks. For more information, visit: www.galenhealthcare.com.
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