Contributed by Jennifer Mueller, MBA, RHIA, FACHE, FAHIMA, Vice President and Privacy Officer, Wisconsin Hospital Association Information Center (WHAIC), and President/Chair, AHIMA Board of Directors

You might assume that it would be a simple undertaking for an individual with decades of health information experience to help her aging father manage his health conditions — but that assumption would be incorrect.

Anyone with aging parents knows firsthand the frustration of helping them manage their health conditions, which often are compounded by the distance between parents and children, low health literacy, and lack of interoperability that causes significant communications challenges.

Life-Threatening but Untreated Condition

I’ve experienced all three with my dad, who lives in Las Vegas while I live 1,700 miles away in Wisconsin. While he has numerous health concerns, he suffers mainly from circulatory issues. He sees a primary care physician and as many as eight specialists who don’t appear to exchange information. That disconnect leaves me in the middle, asking him to send pictures of any medical records he receives so I can Google unfamiliar terms and figure out what is going on.

During one visit to Vegas, I was looking at his medical records and saw one that said he had an ultrasound of his carotid arteries, and he had a 99% occlusion. I didn’t have to Google “occlusion” to know that was a blockage and that 99% was bad. I asked him, “Are you scheduled for surgery?” And he replied, “Nobody told me anything.” And so I said, “You’ve got to call the surgeon right now.” The next week, he had surgery to remove the blockage.

Low Health Literacy Complicates Issues

My father is among those with low health literacy, which is why I ask him to share his records with me. Of course, I probably don’t get everything, so I do the best I can with what I get.

My dad has arteriosclerosis, or hardening of the arteries. Does he know what that means? Does he know that if he doesn’t improve his lifestyle, it will get worse? Due to increased administrative burden, physicians often don’t have time to educate patients on what is really happening.

If I lived in Las Vegas, believe me, I would be going to his appointments. I’ll ask him, “What happened at the doctor’s visit?” And he replies, “Oh, they didn’t tell me anything.” It’s not that they didn’t tell him anything, it’s that he didn’t understand what they said. It was like Charlie Brown’s teacher, and as a result, he doesn’t ask any questions.

Improving health literacy is a challenge. Even my dad isn’t interested in learning, per se. He says, “Just tell me what I need to do.”

Lack of Communication the Biggest Obstacle

But the biggest issue by far is the lack of communication among physicians and their care teams, and the inability for someone to be my father’s healthcare quarterback. His primary care physician is the logical choice, but all of his physicians are independent, and his medical information isn’t shared among providers. With Direct Secure Messaging, physicians could get on the same page. Direct is a secure communication mechanism for protected health information (PHI), photos, and text. More than 290,000 organizations use Direct, exchanging more than 6.7 million secure messages a month. Direct Secure Messaging allows providers and facilities to securely exchange information, despite having disparate health IT systems.

Exchanging data using Direct is just like sending an email — only secure. The federal government spent billions mandating that physicians and hospitals that treat Medicare patients adopt electronic health records (EHRs) and practice management systems, so the data exists and is in the correct format.

Greater interoperability is here in some states, like Wisconsin through the Wisconsin State Health Information Network (WISHIN), but more is coming through other regional and national data exchanges that are currently being set up. Direct is an existing and proven means of interoperability to make sure that providers get the information they need to make informed decisions for dads, moms, spouses, kids, and everyone in between.

Post-Acute Care Even Further Behind

I feel fortunate that Dad hasn’t needed post-acute care (PAC), where the implementation of EHRs and practice management systems hasn’t been incentivized by the federal government. As a result, those providers and facilities are even more disconnected from the healthcare ecosystem than Dad’s specialists are.

A recent survey of 130 facilities and practices that refer to post-acute care and 300 PAC providers showed that nearly all (99%) providers were more likely to refer patients to post-acute care providers that could support interoperability. That percentage has increased from 60% in 2019 and 74% in 2021. Additionally, 96% of providers want to refer to PAC providers that have advanced patient engagement technologies such as real-time data exchange and digital signature capture.

Among PAC providers, just 39% reported advancing their interoperability capabilities over the past 12 months. Top reasons given include workforce and financial constraints and a lack of time to devote to such projects.

This is another area where Direct Secure Messaging can be used to send orders quickly and securely for home health, hospice, or durable medical equipment, as well as discharge instructions, prescription lists, photos of bedsores or wounds, and much more.

The lack of interoperability not only delays care, but it also sometimes prevents care because the provider doesn’t have a clear and full view of the patient. My dad certainly doesn’t know everything about his conditions, his diagnoses, and his medications. And while I do the best I can, I’m not a clinician.

It’s maddening that patient records are still so disjointed when billions have been spent on interoperability and viable sources of data exchange, such as Direct, already exist.