In the midst of the sea of change that is health reform, one thing has become increasingly clear: high utilizers of our health care system matter. A lot. Increasingly, local and national innovations have cropped up to identify the most costly patients, intervene to decrease their usage and, thus, ratchet down their cost to the system over time. To some, this approach is one of our greatest hopes of bending the health care cost curve in our country.
As I sit in my office and think about the grand implications of this innovative, population-based approach, I can’t help but wonder who these high utilizers are. What are their daily lives like? Where do they live? Do they have families or other social supports? Why do they use the system so much and is it with reason?
As it turns out, my sister, Sarah, is high utilizer. She has had 107 medical appointments since July of last year, and in a three-month period at the end of 2012, was admitted to the hospital five times. Had she been covered by Medicaid or lived in a community with a targeted high utilizer intervention during those months, her plight would have landed her on a priority list and a team of care providers would have come to her bedside to make a plan.
Sarah’s cost to the health care system is significant, and it might seem easy to draw conclusions about her and others like her based on her high utilizing medical history. In much of the literature and in my casual conversations, a certain archetype has come to represent this population of high utilization health care patients. A super utilizer is likely to be overweight, low-income, have multiple chronic health conditions, have a mental illness or struggle with substance abuse, and lack an understanding of how to use the health care system correctly.
That doesn’t describe my sister, though. She’s a 27-year-old nurse with loads of understanding about the implications of her medical journey. She eats well, has a strong social support system, and has lived a healthy and quality life until recently. Instead of the comprehensive case management approaches common to interventions targeting high utilizers, she truly needed the best our high-tech medical system could offer, including a battery of tests and specialists, to diagnose an extremely complicated medical condition.
Luckily, after a year of frustrations, fear, and pain, Sarah is on the road to recovery. After ruling out endometriosis, gall bladder dysfunction, cancer, and a slew of other conditions, she was finally diagnosed with diffuse neuromyofascial pain syndrome. She’s been undergoing aggressive physical therapy for six months and hopes to be back at work by the end of the year.
Witnessing first-hand the super utilization of the health care system has reminded me how important the human side of health care cost data is. There are times where high utilization indicates the system is not working for a patient or that the patient has complicated life circumstances, and we must delve into their lives outside the hospital to address the social issues affecting health. There are also times where high utilization indicates the system is working exactly as it is supposed to, and aggressively seeking a health care solution to a complex illness or injury.
Sarah’s medical journey was, and in some ways continues to be, a painful struggle, laced with hopelessness but punctuated by an unmatched resiliency and strength that will ultimately carry her through. As we work to bend the cost curve, I hope we stay focused on the real goal — healthier patients that can get the care they need, when they need it, in the best way possible.