In response to Dr. Johnson’s post, “Like Writing a Letter to Santa Claus,” UK Patient Advocate Suzy Chapman notes that Web-based platforms like Wiki and Facebook are likely to be viewed as little more than token nods in the direction of transparency and stakeholder participation.
[Note: Comment slightly edited from original.]
In June of this year, I raised inquiries with the DSM-V Task Force in relation to the APA’s participation in the World Health Organization’s (WHO) International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders which were passed on to the APA’s Media Relations office.
I was first quizzed on whether I was a member of the press and then whether, as a patient advocate, I was working on behalf of a specific organization. I was told that before the APA was to provide answers to my inquiries, I was to disclose my plans for this information and whether I intended to publish responses. The basis on which these inquiries were being made was duly supplied to the APA’s Media Relations office.
Six weeks down the line, no answers have been forthcoming. Following several gentle prods for a response, I was told that the APA’s Media Relations office “had responded to [my] many other inquiries” and that “the information is available on the DSM-V Web site.”
Since not one query has been answered, since the information requested is not available on the APA’s DSM-V Web site, and since APA’s Media Relations office has declined my request to resend any response they may have already issued, one can only conclude that the APA is seeking to obfuscate the issue.
Similarly, the WHO has embraced new platforms such as wikis and Facebook as part of its own revision process towards ICD-11, in order to facilitate communication and participation by professionals, users, and stakeholders in the ICD-11 development process. But plain, old-fashioned written inquiries relating to the lack of meeting summaries; the provision of a list of members of the ICD-DSM Harmonization Group (which isn’t apparent from the WHO’s Web site), and clarification of what is (or will be) the channel of communication for interest groups wishing to communicate with, or submit proposals to, the new TAG (Topic Advisory Group) for Neurology are being ping-ponged between various key WHO steering and advisory group members. Again, no answers are forthcoming, and there appears to be some difficulty in identifying who is mandated to address such inquiries.
In September 2008, former DSM Work Group Chair Robert L. Spitzer, MD compared the “transparency” of the WHO with that of the current DSM revision Task Force: “It should be noted that in contrast to this new APA confidentiality policy, which discourages DSM-V members from providing information about the ongoing revision process, the World Health Organization has adopted the opposite policy with regard to its development of ICD-11. Minutes of all ICD-11 meetings are posted on the WHO website without any restrictions on who can have access...”
In practice, the WHO would not appear to be publishing minutes of all its meetings on the WHO website other than summary reports of the first 3 meetings of the Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders. Coordinator Dr Geoffrey Reed has yet to publish a summary of the Advisory Group’s last meeting held in Geneva 9 months ago. So I would question Dr Spitzer’s view.
Inquiries from members of the public are also disappearing into a DSM black hole.
Suzy Chapman
UK Patient Advocate
Wednesday, September 2, 2009
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Readers may wish to note that a Summary Report of the 4th Meeting of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders (1-2 December 2008) has now been published on the WHO website.
ReplyDelete( http://www.who.int/mental_health/evidence/icd_advisory_group_december_08_summary.pdf )
The Meeting Summary refers to proposals discussed at the Advisory Group's March 2008 meeting and reports that manuscripts based on these proposals are now in press in Psychological Medicine.
These "Cluster" manuscripts are presumably the "Proposed Meta-Structure for DSM-V and ICD-11" papers, co-authored by various DSM-V Task Force members, DSM-V Work Group members, International Advisory Group members et al, listed at 119 thru 125 on the APA's DSM Revision webpage "Peer-Reviewed Publications from DSM-V Development", under the heading "Task Force Publications".
( http://www.psychiatry.org/MainMenu/Research/DSMIV/DSMV/DSMRevisionActivities/DSMV-Publications.aspx )
In June this year, an Editorial "The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report" by DSM-V Work Group members, Joel Dimsdale and Francis Creed, on behalf of the DSM-V “Somatic Symptom Disorders” Work Group, was published in the June 2009 issue of Journal of Psychosomatic Research, of which Dr Creed is an Editor. The Editorial expands on proposals in the very sketchy DSM-V “Somatic Symptom Disorders” Work Group Update, published on the APA's website, in April. Unhelpfully, APA does not direct the reader to the Editorial.
( http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext and http://tinyurl.com/DSMSDDWGApril09 )
The DSM-V “Somatic Symptom Disorders” Work Group "Preliminary report" was published in the Journal of Psychosomatic Research as a free access document. I cannot confirm when Psychological Medicine intends to publish these "Proposed Meta-Structure for DSM-V and ICD-11" documents that are currently "in press" or whether these will also be freely accessible to non journal subscribers. But given that DSM-V Task Force insists that its oversight of the DSM revision is a transparent process I would like to think that these Task Force publications will be accessible to all stakeholders in the DSM-V and ICD-11 revision processes, irrespective of whether the proposals outlined within them still stand or are now superseded by alternative proposals.
Suzy Chapman
UK Patient Advocate