Insights (Essays)

Insights (Essays) February 2010

The DSM is now Public

Neil Seeman

 

What is happening at the Website DSM5.org is groundbreaking in the history of clinical evidence: all of us may now have a say in the definition of what constitutes mental illness.
 
As a case study in patient-led change, this symbolizes a critical shift for the culture of psychiatry - and may have ricochet effects across all areas of evidence-based medicine.

 

Categorizing psychiatric illness has always been a challenge for clinicians because many syndromes wax and wane, and symptoms change over time. Poor outcomes can result from a variety of beginnings. Just as important, there are no biomarkers - no blood tests or X-Rays or pressure gauges that can confirm or disconfirm a psychiatric diagnosis.

Over time, categories of mental illness have blossomed: developmental problems, mood problems, stress problems, cognitive problems, personality problems, substance abuse problems, and degenerative problems. The vast majority of us will suffer, at one point in our lives, from some manner of illness that falls within one of these categories. Mental illness affects every one of us, either as a sufferer, a family member or a caregiver.

Subcategorizing mental illnesses has been an organic process usually arrived at by professional consensus. Not always without controversy, self-defined experts have weighed in and wrangled until they more or less agreed on a framework. The newest framework - the American Psychiatric Association's fifth edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-5) - matters because insurance coverage and fee structures depend on the nomenclature, and, sometimes, available treatments are more effective for one group of problems than for another.

With DSM-5, everything has changed.

The process of creating the DSM-5 system has been underway for some time, originally due for completion in 2012. That goalpost has been moved further into the future partly because of internal squabbling and the perception that decisions were being made secretly without transparency.  In response, the 'DSM-5ers' have now thrown the process wide open for all to see. The public can look and can comment, and, maybe, a democratic process will rule and categories will arrive by popular consensus. A new era of public accountability in medical taxonomy has arrived. Eventually, gold-standard evidence (clinical trial results) will seek to confirm which symptoms and outcomes signal illnesses of different sub-types.

The DSM, which once considered homosexuality a mental disorder, is now public. This is a pivotal moment in the history of psychiatry, and in the determination of evidence-based diagnostics. By inviting the public into the fraternity of experts, the DSM-5ers have implicitly acknowledged that we all have legitimate insights into the definition of psychiatric illness. I believe the ubiquity of mental illness throughout the general population justifies this position.

This is a departure from healthcare's historic culture of closed decision-making. The process also invites legitimate criticism, as with any form of open innovation. For example, some people who suffer from Asperger's are upset over a proposal that would no longer consider Asperger's as "a separate diagnosis," but would push it into "a single 'autism spectrum disorders' category." On the other side, autism researcher Dr. Edwin Cook, a member of the APA work group proposing the changes, has noted that a new autism spectrum category communicates that the symptoms of these disorders represent a continuum from mild to severe, rather than being discrete disorders.

Orthorexia is seen as unlikely to be included in DSM-5. Time Magazine reports that orthorexia is "a controversial diagnosis characterized by an obsession with avoiding foods perceived to be unhealthy." While "eating-disorder experts are increasingly confronted with patients...who speak of nervously shunning foods with artificial flavors, colors, or preservatives and rigidly following a particular diet, such as vegan or raw foods," orthorexia is not in DSM-5 "and, despite the ongoing efforts of various eating-disorder groups, is unlikely to make its way into the final edition."

The DSM-5 Task Force and Work Group advises its "members are working to develop criteria for diagnoses that not only reflect new advances in the science and conceptualization of mental disorders, but also reflect the needs of our patients."

The term "Task Force" is historically associated with operational warfare. What was once hidden behind barbed wire fence - decision-making based on expert knowledge - is now in the public domain. Call it 'Operation DSM-Unplugged'.

About the Author(s)

Neil Seeman is director of the Health Strategy Innovation Cell at Massey College.

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