Many significant behavioral illnesses, from substance abuse to psychotic disorders, are relapsing in nature. Patients are almost always better when they are discharged from reputable treatment programs, but typically there is little information about their course after discharge. Do they maintain their improvement? Did the treatment facility that they chose help them avoid a relapse effectively? For anyone seeking help, that information should be essential to deciding where to get treatment, but reliable post-discharge outcome data is exceedingly hard to find. It shouldn't be.
The demand for treatment outcome data is increasing, from federal and private insurers that fund treatment but also increasingly from consumers. More and more, consumers are choosing from available programs based on limited self-reported information about outcomes and efficacy. These data are not peer-reviewed, and the information is usually presented selectively. Each program may use parameters that differ from their competitors. It's easy to be creative with the numbers when producing what is in essence marketing material to attract patients to a treatment program. Consumers typically have no way of knowing how a program comes up with its outcome data, and thus no way of making “apples-to-apples” comparisons among programs.
This lack of transparency and standardization is a glaring shortcoming in the fields of addiction medicine and psychiatry. A prospective surgical or medical patient can review and compare hospital outcome data for aortic valve replacement survival rates or leukemia remission statistics. It should be just as easy to make direct comparisons among psychiatric or addiction programs.
We can easily measure and report “before and after” data, comparing patients' signs and symptoms at the time of admission with the time of discharge. The results typically look good, but they don't tell you how effective the treatment of a relapsing illness has been when it really counts—one, two or even three years after discharge.
Call for standardization
There are some fundamental reasons why long-term patient outcome data are so challenging to gather. Treatment evaluation studies are expensive to do well, and currently there is no mechanism to fund them. It also can be a frustrating undertaking because patients often aren't interested in maintaining contact after discharge, so dropout rates can be significant.
Leaders in the field, ideally in collaboration with a federal agency such as the National Institute of Mental Health (NIMH) or the National Institute on Drug Abuse (NIDA) and a professional organization such as the American Psychiatric Association (APA) or the American Society of Addiction Medicine (ASAM), must begin working together to establish industrywide standards that treatment programs agree to use and that would provide a common structure for collecting and reporting data on treatment outcomes. For this to work, institutions will have to agree to report their data in some standardized way—not just selectively on their websites—perhaps in an annual journal of treatment program outcomes data or on a dedicated website hosted by the NIMH or the Substance Abuse and Mental Health Services Administration (SAMHSA).
Institutions that participate could receive a branded verification or “seal of approval” from this governing entity that confirms that they have presented data using standardized measuring and reporting procedures. The incentive to participate would be strong because for those that fail to participate, a lack of verification could hurt their ability to attract patients.
Transparency in reporting will be essential to making fair comparisons. For example, two drug treatment programs could both report an 80% success rate, but if factors such as the type of treatments used, number of patients evaluated, length of evaluation period, and dropout rate aren't disclosed, a meaningful comparison is not possible.
As always, the first question many will ask is, “Who is going to pay for all of this?” One answer could be health insurance companies, through a new modest federal or state tax. Insurers ultimately stand to benefit from the availability of reliable outcome data because they should want to contract with facilities that have quantified efficacy.
The process of gathering and analyzing this information has the additional advantage of providing treatment facilities with a better understanding of the effectiveness of their programs. Hard data provide an essential benchmark against which to measure efforts to improve clinical outcomes. And yes, good outcomes based on data gathered and reported according to standardized procedures can be marketed to referring physicians and prospective patients, who now will have far more confidence in the integrity of these figures.
Everyone involved in helping a person with mental illness or addiction is invested in making the outcome better, and everyone—payers, consumers and treatment facilities—has a stake in creating a reliable reporting process, using data that stand up to scrutiny, as a legitimate quality indicator.
Most importantly, people seeking help for addiction or mental illness are entitled to have access to facts that empower them to make more informed decisions, especially in times of crisis. They deserve to know, as they consider treatment programs, what their chances of long-term recovery really are.