DSM-5 in the Digital Age—Part 1

Many have challenged the claim of the APA/DSM-5 Task Force that the current process is the most “open process in the history of the manual.”  Few have actually provided an argument or evidence of why this might, or might not, be so. What has changed dramatically in the DSM process since DSM-IV in 1994, and even DSM-IV-TR in 2000, is the rise of Internet culture and the “blogosphere.” What does this have to do with DSM-5?

As it turns out, quite a bit. When I was doing the research to write Values and Psychiatric Diagnosis,¹ I did DSM archival work in the APA library, looking at paper documents, letters, and various correspondence. Future scholars of the DSM-5 process will be looking back in a different way, perhaps at some sort of digital archive (if our digital comments survive, see below). Today, some of the most vigorous and interesting debate about the DSM has moved out of the journals, out of APA’s hands, and into cyberspace. (We would know if more vigorous debate might be going on in the DSM-5 work groups, if more of the DSM-5 Work Groups published them as the Sexual and Gender Identity Disorders Work Group has done in a recent issue of the Archives of Sexual Behavior.²

As for a blogosphere example, see the fascinating and thoughtful exchange inspired by Nassir Ghaemi’s discussion of pediatric bipolar disorder “overdiagnosis” on Medscape, and of course, the vigorous exchanges here in the Psychiatric Times provoked by Allen Frances’ and others’ contributions. In the DSM-III days draft criteria sets were sent out via postal mail in book form, by request. For DSM-IV, the American Psychiatric Publishing, Inc. sold copies of the draft criteria. Allen Frances, in the prior century, wrote back to commentators through individual postal letters. Remember them? Today anyone with a computer and a web connection can contribute. This development definitely adds support to a claim that DSM-5 as the “most open process ever”. However, who deserves the credit?

Let’s look at a little more history. What is now the APA DSM-5 website was developed originally by Michael First in 2004 as the DSM-5 “Prelude” Project (www.dsm5.org), only later to be taken over by APA in 2007 as part of their official DSM-5 website (First, personal communication, 2010). One can hardly give the DSM-5 Task Force much credit for either the new media opportunities or First’s foresight in using them. We can, however, thank APA for continuing and expanding First’s innovation.

The DSM-5 website enables provision of not just draft criteria but comparisons against DSM-IV-TR criteria, rationales, and severity considerations. This is a great idea in theory. In practice, however, the rationales were in large part missing for many draft criteria sets, and complete postings for a number of disorder categories never appeared before the open commentary period closed in May 2010. One can speculate upon the reasons for this partly-botched opportunity for substantive outsider input. One worry I had previously discussed in Values and Psychiatric Diagnosis was that DSM developer interest in “outsider input” may be gestural rather than substantive. Another reason may be the open-posting format is a for-convenience-only afterthought on the part of Work Groups/Task Force. Still another is some work groups may not be far enough along to post the standard template materials, and are struggling to get up to speed with other Work Groups. It’s unfortunate that the web openness has only been partial. Nevertheless, David Kupfer and others have announced changes based upon the impressive response to the open commentary period.

Let’s think more carefully about moving draft criteria and commentary to the Web. If, like the Psychiatric Times, we really wanted to know what people thought, we might want to post comments to draft criteria online, to fully utilize the Web’s participatory capabilities and democratic spirit. We might even advance the discussion further in less time. However, the DSM-5 Web openness was limited to closed online suggestions, rather than open blog commentary. Why? I worry that it is about power and control, and the desire to simply side-step blog-generated consensus (if such could appear!) and avoid outsider pressure on the DSM-5 insiders to respond in a substantive way. What does happen to those suggestions I and others submitted? What about the suggestions collected by Michael First in 2004-2007? Who looks at them? How are suggestions assimilated into the process? How would we know if the suggestions are in fact considered? Is there something like a due process for reviewing suggestions? DSM-5 insiders—would you provide explanations?

A substantive portion of the debate has moved to non-academic cyberspace, and in some ways that’s a shame because we lose the quality controls of a peer-review system. However, speed and accessibility is a boon, and many more questions get to be asked! I wonder if the online submission format has resulted in quantitative and qualitative differences in outsider input compared to the DSM-Options Book era.

Finally, I worry about the historical fate of DSM-5 online material - I printed out everything I thought relevant to an eventual “second edition” of Values and Psychiatric Diagnosis for fear that pages will be deleted, the site will be dismantled, and the historical unfolding of this process lost forever. Will there be an historical web archives for scholars, will the DSM-5 online documents disappear altogether, or will they be cherry-picked files suitable for “Whig” histories (eg, documenting the most advanced and glorious moments of DSM-5 development)?

References
1. Sadler JZ. Values and Psychiatric Diagnosis. Oxford/New York: Oxford University Press; 2005.
2. Zucker KJ. Reports from the DSM-V Work Group on Sexual and Gender Identity Disorders. Arch Sex Behav. 2010;39:217-220.