Navigating the Health Care System is a Challenge—Even for Those Within It

September 20, 2024 · Eric Schneider, MD, M.Sc.

As a practicing primary care doctor and health policy researcher, my life’s work has focused on improving health care and making it more equitable. If anyone could navigate the intricacies of today’s health care system to get the right care for a loved one, you would think I could.

You would be wrong.

In 2021, I noticed that my stepmother was finding it harder and harder to engage in our pandemic Zoom calls. She repeated herself, and her personality seemed different. When our first visit in over a year became possible, we found that she had become frail and withdrawn at times, agitated at others. It was clear something more than pandemic social isolation was causing the trouble.

Fortunately, her assisted living facility was connected to a nursing facility and we moved her there. But the change of scenery only added to her agitation. To make matters worse, the medicines prescribed for agitation led to delirium as a side effect, prompting a hospitalization. While her delirium eventually improved, her memory problems worsened.

Despite the many tests she received—at the nursing facility, in the hospital and at a rehabilitation center—she did not receive a proper neurologic evaluation until I personally arranged one months later. At that point, her condition was significantly worse. I heard nothing back from the neurologist or her doctor until I made multiple calls. They concluded she had symptoms of dementia but had done nothing to investigate why, even though the changes were unusually rapid.

An Eye-Opening Experience

Over the course of my early years as a primary care doctor, I shared the frustration and desperation of family members trying to secure care for their loved ones, but experiencing it firsthand as a doctor and caregiver was eye-opening.

Health care in the U.S. is a series of roadblocks that arise from a lack of coordination and communication—not just between facilities but, at times, also among members of the same care staff. During one of her hospitalizations, a staff member recommended putting my stepmother on a drug that previously had aggravated her agitation at a different facility. The nurse said she was unaware of that earlier episode even though it was recorded in her chart.

As often happens, the views and observations of caregivers and family are discounted. I’m a physician and have known my stepmother for decades, but none of that seemed to matter to her doctors who seemed uninterested at best.

Patients’ concerns, too, are often dismissed. This is a well-known safety issue. My stepmother was susceptible to falls, and the restrictions facility staff placed on her activity frustrated her unnecessarily. The nursing staff literally yelled at her to “Sit down!” when she attempted to rise from her chair without assistance. While the rules were in place for her own safety, my stepmother’s condition prevented her from understanding this. Her abusive outbursts were characterized as willful behavior rather than symptoms of her condition.

To be clear, the independent living and nursing facility where my stepmother lived was highly rated and, in my experience as a doctor, one of the best I had seen in my career. Still, despite my knowledge of the health care system and the benefit of highly-rated facilities, getting my stepmother the care she needed was a challenge.

New Paths Forward 

Today’s digital technologies have the potential to improve communication significantly. My work over the years, and most recently at NCQA, has focused on the use of electronic data and records to enable clinicians to provide better and more equitable health care. The 21st Century Cures Act, which mandates providers to share patient data and records upon request, was a step in the right direction toward remedying some of the challenges my stepmother faced. But there is much more work to do if we want to enable interoperability across all areas of the health care system.

We often talk about the “business case” for building digital infrastructure in health care organizations, and while there is a compelling argument for interoperability from an operational and financial perspective, it is equally important to consider the human impact of these initiatives. My stepmother is just one example of a vulnerable patient who desperately needed her care providers to share data with each other in real time to improve her overall experience and the quality of care she received.

Let’s never forget that there is a person—as well as their caregivers and family members—attached to every digital health record. And they are relying on all of us who work within the system to make health care more efficient, safe and equitable for all.