New programs targeting health care 'superusers' abound, but don't overlook the skeptics

For three months this year, I spent time with some of the sickest and most expensive patients in America — the people who pinball around the health care system, racking up costs that we all indirectly pay through federal and state taxes that go to Medicaid and higher health care bills. 

During that time I’ve learned about the great promise of the work, the deep skepticism surrounding it, and why innovations that improve health and save money are so rare. But before we get to those lessons, here’s some background.

As the Government Accountability Office outlined this spring, just five percent of patients nationwide make up 50 percent of health care spending. It’s a group Atul Gawande documented in his seminal New Yorker article, “The Hot Spotters,” in 2011. Since then, we’ve seen some in health care shift their focus toward people who are among the most marginalized in our society.

The theory is that underlying problems like mental illness, poverty and isolation drive some patients with chronic illnesses to be hospitalized and use the ER more. So addressing those social problems could cut costs. The consultant group Oliver Wyman estimates we could save as much as $300 billion annually if we find better ways to treat people with chronic illnesses.

According to The Robert Wood Johnson Foundation, there are programs trying to meet patients’ social needs in at least 26 states. And there are encouraging signs. Put your ear to the ground and you hear these powerful anecdotes about cutting hospital and emergency room use by 20, 30, or even 40 percent.

As a reporter, it’s incredibly tempting to focus on these sorts of stories. I know, I’ve written them.

After reporting this seven-part series, it would have been easy — and satisfying — to profile patients who struggle in keeping up with their chronic illnesses. My sources gave me mountains of material. Carrie, who knew what she needed to eat to manage her diabetes, but couldn’t afford it. Denise, who had been robbed of her childhood, battling addiction and on the path to recovery. Evelyn, who felt her doctors had given her up for dead, now thriving.

This is where I had to tap the brakes.

Before giving in to that impulse to tell powerful, honest, human stories and introduce my audience to these people, I had to acknowledge that there are lots of modern-day Dickensian tales of woe floating around out there. Those tales have done little to stem the billions of dollars we spend every year on patients whose health continues to get worse.   

In short, it seems like profiles alone are unlikely change the conversation. Innovative work targeting these patients is ramping up and I wanted to produce stories that could influence the shape that takes.

It’s reasonable to think we will see a lot more of this work in the near future. Tackling patients’ social problems certainly squares with Washington’s new world view, where value trumps volume. And a number of philanthropists including the Robert Wood Johnson Foundation, the Peterson Center on Healthcare, and The Commonwealth Fund are investing in this area.

Given that and the possibility — at least on paper — of improving health and saving money, I was surprised so many hospitals, insurers and doctors were reluctant to tackle underlying social issues for their neediest patients. So rather than personal stories, I thought a more powerful approach would be to examine why so many of these industry players are sitting on the sidelines.

Here are a few key things I learned producing the Marketplace series “Caring for the 5/50s.”

Skeptics have two big beefs with new approaches to caring for such patients. First, to do this work well, you must change deep-rooted behaviors, often involving mental illness and addiction. That’s hard to do even with top-notch programs and motivated patients. A real (and daunting) question is how well health care folks — who are trained to address medical problems — can move into a world when there often aren’t many good answers.

The other criticism is data. For all the work going on in this corner of health care, few are evaluating their programs in rigorous-enough ways to persuade the people who remain unconvinced. One solution is for philanthropists and the Centers for Medicare and Medicaid Services — who are big funders of this work — to insist that programs use control groups to evaluate their effectiveness. There is an understandable fear of failure, but as Harvard’s Dr. Ashish Jha suggests, “Focus on the lessons that we learned and say this should allow us to design better interventions in the future.”

With the promise of this work so great — saving money and improving health — it seems like we are ethically obligated to understand what is possible and what isn’t. Jha predicts until that day, this work will likely “remain a series of pet projects.”

And that leads me to the last thing I’ve learned.

Few of us ever get to know these patients, sometimes called “the 5/50’s,” “the super utilizers,” or, perhaps pejoratively, “frequent fliers.”

Maybe that’s why it’s so easy to blame these people who turn-style their way through ERs and hospital rooms. These are, often, people who smoke, drink, eat unhealthy foods, use drugs and fail to manage their asthma, diabetes or heart disease. These are people who are both invisible on the sidewalk as they ask for change and notorious in policy discussions as the ones who land in the ER over and over because they “don’t know any better.” The tacit assumption is that these super-sick, super-expensive patients are abusing the system.

But as I traveled to Dallas, Boston and Portland, Oregon I learned how overwhelmed many people are just trying to get through the day. For people so consumed with their mental illness or their addictions, managing their diabetes is at the bottom of their priority list. I learned that many of these people are socially isolated; some of them are so alone they seek out the comfort and kindness of health care providers because they have nothing else. I learned how these patients (many, but not all) will often leap at alternatives to the emergency room. If doctors, nurses, executives and entrepreneurs want to strengthen care for the most expensive patients in America, they should keep in mind Dr. Clemens Hong’s observation: “The perfect marriage is data and relationships.” That means the focus is less about elaborate systems and more about better understanding people through both data and through personal relationships.

I’ll finish by saying that this is just the beginning of a journey that stretches on. Perhaps the most important question in my mind is whether this work should be pursued only if it both improves health and saves money. Innovations that do both, such as vaccines, are rare. But should that mean giving up on projects that may not save money but do improve people’s quality of life?

**

Related posts

Personalizing medicine with tailored social services