DSM-V: Transparency or Secrecy?

In a world expecting greater and greater transparency in how important medical and mental health research is conducted, should such transparency extend to the intricate workings of determining what constitutes a valid mental disorder diagnosis?

That’s the question posed by two sides wrangling over how transparent the new DSM-V process should be. Robert Spitzer, a former editor, wants more transparency, while the current editor, Darrel Regier, suggests the process of should be kept private.

The DSM is short for the Diagnostic and Statistical Manual of Mental Disorders, the “bible” of mental health that defines what a mental disorder is. Technically, if a disorder doesn’t appear in the book, it’s not considered a legitimate disorder nor can a therapist bill an insurance provider for reimbursement in treating it. The DSM is in the process of undergoing its fifth revision, which is planned for publication in 2012.

Arriving at whether a diagnosis makes it into the book or not is part science, part politics. There is no flowchart that says if disorder has X positive research studies and affects Y people, it gets in. Instead, it’s a largely bureaucratic, committee-driven process where the committees are staffed by experts and researchers for a set of disorders (like “mood disorders,” or “anxiety disorders”). It’s a process. It may not be the prettiest or best-designed process (sort of like that old adage about you shouldn’t ever ask to see how sausage is made), but it appears to work, at least in the sense of providing somewhat discrete diagnostic categories that we can design somewhat effective treatments for.

The Los Angeles Times has the backstory on this issue:

The more you know about how psychiatrists defined dozens of disorders in the recent past, the more you can appreciate Spitzer’s concern that the process should not be done in private. Although a new disorder is supposed to meet a host of criteria before being accepted into the manual, one consultant to the manual’s third edition — they’re now working on the fifth — explained to the New Yorker magazine that editorial meetings over the changes were often chaotic. “There was very little systematic research,” he said, “and much of the research that existed was really a hodgepodge — scattered, inconsistent and ambiguous. I think the majority of us recognized that the amount of good, solid science upon which we were making our decisions was pretty modest.”

The LA Times story was written because this debate made it into the summer Psychiatric News, one of the weekly periodicals commonly read by practicing psychiatrists. Here’s the exchange, which you can read online:

• DSM-V Development Will Be Complex and Open Process
• DSM-V: Open and Transparent?
• DSM-V: Open and Transparent? Response
• DSM-V Compromise Proposed

The DSM-V process could already come under fire for a glaring loophole you could drive a truck through in its conflict of interest policy (noted in the first article):

For example, each work group member’s annual income derived from industry sources (excluding unrestricted research grants) cannot exceed $10,000 in a calendar year throughout the time of their involvement with DSM-V.

Just so you read that correctly, you could make $1,000,000/year for 10 years from a company prior to your work with the DSM-V. All you need do is to cut off that relationship for a few years, and then come back to it when you’re done. And while the DSM is completely moot on treatments, how a diagnosis is framed (and especially the criteria used) can favor the inclusion of new disorders for which certain types of treatments are preferred or recommended over others.

As we’ve pointed out previously, not all conflicts of interest are purely or directly financial. A researcher who’s best friends with another researcher who’s made a career detailing the development of a “new” disorder has a great interest in seeing that disorder make it into the DSM-V. How is that conflict measured by traditional conflict of interest policies and disclosures? It’s not — most professionals would never report that as a conflict of interest.

Our take on this whole issue? Open government laws require that most governmental public bodies hold public meetings, to ensure the integrity of the process, especially given that laws made can affect everyone. Exceptions are made in the interests of national security and such.

Given the wide reach of the DSM to affect so many people’s lives, and the fact that the psychiatric profession’s integrity right now is at an all-time low (as seen by the failure of leading psychiatric researchers to report conflict of interest income), I’m not sure what the committees have to lose by making their process more transparent. Perhaps not as open as public meetings or what-not, but allowing for the regular publication of edited transcripts of meetings seems appropriate and useful to the public interest. These committees have no reason to act in secrecy because the topics they are discussing are not secret subjects.

When such a body has the ability to significantly impact public health in the way the DSM-V committees do, they also have a public responsibility to ensure meeting participants are held to the highest ethical standards of disclosure and conflict of interest. The best way to ensure such standards is through transparency. We see no reason for these meetings not be made available, in some form or format, to the public.

Read the LA Times article: Wrangling over psychiatry’s bible

Want to read more about how the DSM-IV was created? I recommend, They Say You’re Crazy: How The World’s Most Powerful Psychiatrists Decide Who’s Normal by Paula Caplan.

(As a side note, it’s interesting to note the LA Times article uses the word “secret” rather than the word “private.” Secret is an emotionally-laden word implying a need for secrecy, while private only denotes that something is being held outside of the public eye.)