Frequently, “power users” of healthcare are seen negatively.

Whether because they are seen as more “demanding” patients or because of their relatively larger “burden” on the healthcare system, there is often a bias against these patients.

But a recent study — a collaboration among the New York Times, The Commonwealth Fund, and the Harvard TH Chan School of Public Health — looked in depth at these patients, both putting a spotlight on their behavior and experience, as well as sharing the wisdom they have about how to interact effectively with the healthcare system. Interestingly, much of what they shared advocated for a more collaborative, connective way of doing medicine.

In this study, “power users” of healthcare are defined as “people who have been hospitalized multiple times and are seeing multiple physicians, related to a serious illness, medical condition, injury, or disability.”

Of course, their perspective holds a lot of important insights for healthcare providers, for a few reasons. They: 

• Have experienced more facets of the healthcare system. 
• Necessarily developed skills and habits to deal with the shortcomings and strengths of the system. 
• Are sicker and so may tax the system more, revealing faults that go less noticed otherwise. 

So this study of their experience, problems, and advice is enlightening. Among the findings: 

• 30% say they were sent for duplicate tests by different healthcare providers.
• 23% have had to wait too long for appointments, treatments, and tests.
• Overall, they offer the following advice for navigating the medical system:
  • Show your doctor a list of medications you are taking (78%)
  • Bring a list of things to discuss with your doctor (70%)
  • Bring a family member, friend or someone else to all of your medical appointments to serve as a coordinator (55%)
  • Seek advice or help from a family member or friend who is a doctor, nurse or other health professional (34%)
  • Seek advice or help from a former patient who had a similar health condition (23%)

Our take on these results? People who use the medical system a lot experience the delays, confusion, and duplication caused by healthcare providers that aren't able to coordinate care or do healthcare collaboration. For that reason, the advice these patients offer tends to revolve around creating their own solutions to ensure care coordination on their behalf.  

Instead of patients trusting doctors and other providers to coordinate care, they do it themselves or involve friends or relatives to support them in doing it. This behavior certainly makes sense. And it's a wise way to approach a well-intentioned system that doesn't always work. But it does concern us, since patients have only a limited ability to truly coordinate care on their own behalf. For instance, a patient can bring a list of medications they are taking, but they can't bring a list of providers who should collaborate on a case. They can ask a friend to offer advice, but they can't necessarily facilitate meaningful conversations among all of the members of their care team. 

That's why we believe it's necessary for healthcare providers to have the tools they need to truly effect care coordination and healthcare collaboration. Sure, patients may fill in the gaps. But their ability to identify all of the possible gaps and truly fill them effectively is limited.