(Apr. 19, 2017) A crisis in search of data, released today by the Treatment Advocacy Center, began two years ago with the expectation that we would find abundant data, including cost data, about the role of severe mental illness in super utilization – the relatively frequent use of public services by a relatively small number of people.
After all, we had read the eye-opening New Yorker article on hot spotting, seen the headlines about people like “Jane” of New Jersey and her $4.4 million in hospital charges over five years and heard from countless families about loved ones with psychiatric disease being caught in the revolving door of repeated arrest, incarceration, hospitalization, homelessness and other public services. If we could amass all the relevant literature, we could analyze it for the cost of leaving people with mental illness untreated to cycle repeatedly through high-cost systems.
Overlooked and Undercounted – Again
Alas, as is too often the case, the impact of serious mental illness on a national healthcare issue with huge personal, social and economic consequences turned out to be overlooked or undercounted in official data collection and statistics. In most cases, mental illness was not examined as a contributor to super utilization. When it was, the data were typically too local or narrow to combine with other data.
On the way to this conclusion, we recruited the College of Public Health at Kent State University (KSU) in Ohio to conduct a systematic review of academic studies published in English from January 2005 to June 2016 reporting on the role and cost of serious mental illness in high utilization within the target systems. The team initially identified 3,174 sources in a series of searches. After removing duplicates and applying other criteria, only 21 peer-reviewed papers and nine dissertations remained. Nearly all pertained to serious mental health care.
To supplement the KSU findings, the Treatment Advocacy Center’s Office of Research and Public Affairs conducted a broader search that included mass media news reports, government studies, conference proceedings, professional and trade association reports, think tank white papers and other gray literature that did not meet the standards for the systematic review or was published after June 2016. More than 200 additional sources were reviewed in this process.
The outcome? “While reasonable estimates are made in the literature, comparable national or state-level data that quantify the role and cost of individuals with SMI on law enforcement, corrections, emergency medical or homelessness services do not exist. Even less information is available about the impacts of the super utilizers within the (serious mental illness) population.”
As an example, we can estimate how many individuals with serious mental ill are booked into US jails but not discover the number or impact of the relatively few people who are booked over and again. Without this data, the role of serious mental illness in the super utilization of criminal justice services remains unknowable.
Exceptions to the Rule
Notable exceptions to the rule of neglect were found in the search. They are important not only because they contribute meaningful data but because they illustrate what is possible.
- In Florida, researchers analyzed a sample of 120,134 public mental health clients with serious mental illness in three counties to identify impacts and costs to healthcare, criminal justice and selected social systems over a four-year period. Conducted by the Florida Department of Children and Families and the Louis de la Parte Florida Mental Health Institute at the University of South Florida, this was the most thorough intersystem study we found.
- In southern New Jersey, the Rutgers University Center for State Health Policy analyzed Medicaid claims data from 2008 to 2011 in order to identify super utilizers, defined as the top 1% of users in the health care system. Separately, the university has been analyzing healthcare utilization patterns to identify the role of mental illness and substance use in hospital utilization rates and costs.
- In San Francisco, the Department of Public Health identified 51,796 patients from fiscal year 2010-2011 where used the city’s medical, mental health or substance abuse services and separately analyzed a sample of 15,712 individuals with serious mental illness for their high utilization patterns.
- In Philadelphia, the city in 2010 matched the homeless shelter and street outreach records for 2,703 chronically homeless individuals with their records for psychiatric care, substance abuse treatment and incarceration to isolate the intersystem impact of serious mental illness on high utilization of all these services.
- In the academic community, Jangho Yoon and Jeff Luck of the College of Public Health and Human Sciences at Oregon State University analyzed psychiatric bed and jail populations to conclude that jail costs could be reduced 26% for each extra dollar invested in psychiatric hospital beds per capita.
Examples like these show the role and cost of serious mental illness in super utilization can be tracked and reported. It is critical that they are.
“Without a complete picture of the impact on the component systems, policymakers do not have the information they need to analyze the net impact of serious mental illness on high utilization between systems,” we conclude in A crisis in search of data. “This lack of information limits their ability to make evidence-based tradeoffs, including cost-benefit decisions.”
Doris A. Fuller
Chief of Research and Public Affairs
References:
- Fuller, D.A. et al. (April 2017). A crisis in search of data: The revolving door of serious mental illness in super utilization. Treatment Advocacy Center.
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Research Weekly is a summary published as a public service of the Treatment Advocacy Center and does not necessarily reflect the findings or positions of the organization or its staff. Full access to research summarized may require a fee or paid subscription to the publications.
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