Contributed by Melinda Wilkins, PhD, RHIA, FAHIMA, Professor of Health Informatics, Arkansas Tech University

Moxie. That single word perfectly describes my mama, both as a 12-year-old in her school picture from 1947 and today as an 86-year-old mother and grandmother. She has a drive and determination that has always given me inspiration and courage to tackle life’s challenges.

As anyone who has cared for elderly parents knows all too well, life can be a series of ups and downs as people move among primary care, specialty care, hospital stays, tests and procedures, post-acute care, independent living, assisted living, and every medical provider in between.

I’ve spent my career in health informatics, helping tease out care trends using information gleaned from various technology systems. I see the promise in the Trusted Exchange Framework and Common Agreement (TEFCA) regarding interoperability of patient records and the ability to pull data from disparate sources into a single patient record.

But as a daughter and a caregiver, I’ve seen firsthand the challenges that patients face moving to and from post-acute care facilities. Often, their medical records don’t move with them, which brings confusion over the best course of continuing treatment. This insufficient handoff can result in hospital readmissions, underprescribing or overprescribing of medications, and worse health outcomes.

My mom, Clara Ann Jennings, has been a victim of an insufficient handoff that resulted in a fall and a brain bleed just a week after being released from another hospital for the same condition. As qualified health information networks (QHINs) further the nationwide interoperability effort, post-acute care centers must not be left behind in the interoperability landscape.

Proven technologies such as Direct Secure Messaging already facilitate interoperability to ensure providers have the information they need to make informed decisions.

Getting the Most Out of Life

There’s no question that my mother has led a hard life. However, she’s always approached that life with a big smile on her face and great sense of fun.

Born during the Depression as the second oldest daughter of 9, her family grew up near Snyder, Texas, in a three-room shack with no indoor plumbing. Clara was 12 when her mother suddenly died, thrusting her into the role of mother because her oldest sister had moved away. One of her siblings was an infant and another was disabled, but she didn’t think a thing about the extra work.

In addition to cooking, cleaning, sewing and raising her younger siblings, Clara still found time to finish high school, where she was voted class favorite and most likely to succeed. She went to college at what was then West Texas State University but left after a semester, worried that she was taking money away from the family. She settled in Tulia, Texas, roughly equidistant between Amarillo and Lubbock, and got a job at the local city hall. She soon met my father, got married, and started having kids, me, my two brothers, and a sister.

Brain aneurysms run in the family, and my mom’s luck ran out in 2006. Following surgery for an aneurysm, she had a stroke, which wasn’t caught until the next day in the hospital. At the same time, my father started having dementia and Mama was in a rehab facility for a long time. My siblings and I all lived out of state so we handled the situation from afar as long as we could, then I moved them from Texas to an assisted-living facility in Arkansas close to me. It was then that I started to see issues that lack of interoperability can cause.

Lack of Interoperability Makes Difficult Situation Worse

Fast forward to 2022. My father passed away in 2014, and Mama remained the life of the party at the nearby assisted-living center. Then my mom began falling. One of the later times she fell, she suffered a subdural hematoma. We spent five hours in the local emergency department, then went by ambulance to Little Rock, more than an hour away. Mama spent 35 hours in the emergency room there, waiting for an ICU bed.

Many years ago, my smart mama made sure she had all of the legal paperwork in place for potential caregivers. Having a Power of Attorney for Healthcare has been very helpful. However, even with this, it has been very difficult to pull together her overall medical picture.

While she was in the ED, I tried to find out information, but no one could tell me. They’d say, “We’ll get with you. We’ll let you know.” And they would ask me specific questions about medications and things that are in her medical record, because they didn’t have that information. I answered their questions the best I could, but the larger issue was that the ED didn’t have the information in the first place.

Finally, they told me that she was being discharged, and I came to pick her up. I questioned why the hospital was discharging her directly from the ICU back to her home. The nurse bringing my mother to the car said, “The nursing home will know what to do.” I replied, “She doesn’t live in a nursing home.”

But the nurse put Mama in my car, shut the door, and walked away. And I was left to figure it out.

Mama and I had a little picnic in the parking lot of a local Chick-fil-A while we figured out what to do next. I worked with the assisted-living center to get her some physical therapy, but a week later she fell again, resulting in another brain bleed that necessitated a helicopter ride to another Little Rock hospital.

The same issues concerning lack of information came up again. The new hospital didn’t even know what had happened at the previous hospital a week before!

Mama is now in a nursing home, where she’s doing as well as can be expected. I have no doubt that she shouldn’t have been discharged the way she was. I have a similar story involving my dad and believe it led to an earlier death. Nothing is going to bring my father back or return my mother to full health, so I want to focus on how to make things right for others.

Interoperability Should Include Every Provider

Every healthcare provider across the continuum of care needs to get on the interoperability bandwagon and make it easy to share information. While the promise of TEFCA remains bright, nursing homes and other post-acute providers are lagging farther behind.

I’ve talked with personnel at both the assisted-living facility where my mama lived then and the nursing home where she is now, and interoperability is not on their radar. But when I mention interoperability, people at both facilities said, “That would help us so much if we had that information from different hospitals and physician offices.”

The lack of interoperability is apparent in many of the EHR systems used by nursing homes, because Meaningful Use didn’t apply to post-acute care providers. However, Direct Secure Messaging is a common feature in most EHR systems, providing a secure way to send and receive continuity of care documents (CCDs) and other critical healthcare information. I have hope for the future as more EHRs and technologies used in the post-acute space incorporate Direct.

Since I started sharing Mama’s story several months ago, I can’t tell you how many people have told me similar tales. I recently gave a presentation at the Arkansas Health Information Management Association (ArHIMA) and my co-presenter, who works at the state HIE, said he was having the same issues caring for his grandmother who had fallen and suffered a brain injury.

Post-acute care providers simply must be included in the interoperability conversation to provide a better care experience for patients and their caregivers.

DirectTrust is eager to see additional adoption of the Direct Standard®, Direct Secure Messaging, and the Event Notifications via Direct standard in the post-acute care space to eliminate the difficult care handoff Melinda and Clara experienced. Interested in learning more? Reach out for additional information.