High utilizers of our health care system matter

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.

Joe Sammen is director, community initiatives, Colorado Coalition for the Medically Underserved.  He can be reached on Twitter @joemsammen.

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  • Mengles

    Wait, if health care is a human right (as Democrats and Obama have been telling us), then why does it matter how many times I use it?

  • Anthony D

    BarryCare solves nothing and the simple proof is in the delays, the exemptions, the government picking up the tab for it’s own, doctors leaving, etc etc. As usual, an inept government controlled by unelected officials has rushed a bad piece of legislation. This bill will never work and millions will suffer. The uninsured had it much better before this garbage legislation that Harry Reid has said will lead to a single payer system… just what they wanted all along, total control and just what will destroy the medical system in the US.

    • bill10526

      Gosh, Anthony D, this site is not the Rush Limbaugh show. Once we introduced competition to medical insurance (the monopoly Blues worked well.), companies had to underwrite risks to get actuarially appropriate premiums. But then people try to sign up only after getting sick. They get mad at the Insurance companies for exempting pre-existing conditions. and the individual insurance market in New York State literally collapsed.

      To get community ratings, mechanisms have to be in place to socialize some costs for the sick and poor. The ACA does that. I think it does too much preventative stuff, but it basically does that which needs to be done.

      I have been reading about the satanic cult child molestations cases of the 1980′s. Americans are susceptible to moronic hysteria. Penn State is a current example of community madness as is the furor over ObamaCare..

      • meyati

        I’m a democrat, and I believe Anthony D. I’m seeing it happen now.

        • bill10526

          Firing up the public is a political strategy. Think about Benghazi or the IRS matters. There was absolutely nothing in those cases and there is close to nothing in the hullabaloo about ObamaCare.

          The net effect of the law is to transfer the cost of uncompensated care from those now having health insurance to those giving rise to the costs and the general public. The excess preventative stuff will add to total burden as will just having coverage. Those effects are small in the scheme of things. We have to stop extending lives of very sick old persons. Those cases can be more torture than care.

          The sky will not fall with ObamaCare.

  • Tiredoc

    107 doctor visits in one year and 5 hospitalizations for diffuse neuromyofascial pain syndrome? I’m pretty sure your sister’s days as a high utilizer are just beginning.

  • SarahJ89

    Hundreds of thousands of dollars were poured into my health “care” over a 20 year period in the service of a misdiagnosis. It galls me to think I would have been targeted as a problem when the real problem was the failure of many; many doctors to listen to their patient. I knew for years exactly what the problem was. Three weeks of belated treatment and ten dollars worth of thyroid hormone per month put me on the road to health.

    Unfortunately, no one can replace the loss of my satisfying career, two decades of unwanted disability payments and the colossal drain on the health care system.

    • PCPMD

      You mean that despite 20 years of typical symptoms, nobody ever thought to check your TSH?

    • Suzi Q 38

      I have had the same problem with my doctors.
      One admitted that he had to “listen more to his patients.”
      I guess that was an apology of sorts.

      Too bad I can’t walk right now and am barely weight bearing.

      Luckily another doctor interceded and got me the proper care.
      Through it all, I still believe that there are good doctors out there.

      You have to fire the bad ones as soon as you recognize them.

      • meyati

        On my first visit with my current PCP, he told me how low and high thyroid injures the heart. My hypothyroidism went out of range in Dec. then I had nose radiation. My PCP kept giving me fancy reasons why I needed to wait a bit longer before I had another thyroid scan. He recommended a skin lotion for my dry skin. After I got home I cried, and on the EHR, I told him that I couldn’t take it anymore. Dry skin is the number one symptom of thyroid problems. He ran another scan, and increased my thyroid.

        Tomorrow I’m going to the cardiac department for stress, and echo test. The ER got me in. I feel so tired, my chest is so heavy, my left arm hurts, I sleep 12 hours a day. I get winded just from sweeping the floor, and it’s getting worse daily. I’m just not a happy camper. What happened to my PCP? I really think the medical group is trying to reduce medical costs through reducing testing. Penny wise, pound foolish.

  • lissmth

    Has anyone looked for Lyme disease? She sounds typical. Few doctors know anything about it even though CDC says there are 300,000 cases a year.

  • Stefani D

    What about high physician utilizers…you know, the ones who order and order and order with little regard for utility, cost, and risk?

    • meyati

      I’m one. I had strep for 3 months-so I kept going into my doctor, went to Urgent Care and the ER. They said- Virus-finally a strep test was run. Acute strep. If medicine 101 had been practiced-sore throat=strep test, I wouldn’t have been a nagging frequent flyer, and thousands of dollars would not have been spent on me. Unfortunately, I stopped walking my dogs, I get easily winded and fatigued, etc. The system is sending me, free of cost to cardiology tomorrow. I just want walk my dogs, clean my house and finish building a cabinet. So how much more is going to be spent? I’m also paying for this with my body.

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