Tuesday, September 1, 2009

Like Writing a Letter to Santa Claus

A reader sent us a note regarding his experiences in providing feedback to the DSM-V committee:

"I responded to the chance to upload to the DSM-V website an article I published with suggested DSM-V criteria for addiction - perhaps 6 months ago. There was never a response. My comments went off into cyberspace. I had my administrator try to follow up with a call to the head of the DSM-V committee, Charles O'Brien, MD. No response. So while it is true that there is a way to “give input,” there is no evidence that anyone on the DSM-V committee I wrote to ever saw the input. It was like writing a letter to Santa Claus at the North Pole.

Brian Johnson M.D.
Director of Addiction Psychiatry
SUNY Upstate Medical University"

How do you feel the DSM-V committee should handle feedback? Should a more public "sounding ground" be offered, such as a forum or Facebook?

Check out our DSM-V page for updates!


  1. Enquiries from members of the public are also disappearing into a DSM black hole.

    In June, this year, enquiries were raised with the DSM-V Task Force in relation to the APA's participation in the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders. These were passed on the APA's Media Relations / Communications office.

    The enquirer was quizzed firstly on whether they were from a news organization; then, whether, as a patient advocate, they were working on behalf of a specific patient advocacy organization; what the enquirer's plans were for this information and whether they intended to publish responses, and that this information would be required before the APA could provide answers to their questions.

    The basis on which these enquiries were being made was duly supplied to the APA's Media Relations office. Six weeks further down the line, no answers have been forthcoming. Following several gentle prods for a response, the enquirer has been told that the Media Relations office "had responded to [their] many other inquiries" and that "the information is available on the www.dsm5.org site."

    Since not one of these queries raised has received an answer, since the information requested is not available on the APA's DSM pages and since APA Media Relations / Communications has declined a request to resend any response they may have already issued but which might have gone astray in cyberspace - one can only conclude that the APA is seeking to obfuscate.

    The WHO is embracing new platforms such as wikis and Facebook (http://www.facebook.com/pages/ICD-Revision/117942832025) as part of its own revision process towards ICD-11, in order, it says, to facilitate communication and participation by professionals, users and stakeholders in the ICD-11 development process.

    But plain old fashioned written enquiries 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 website) 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 enquiries.

    In September 2008, former DSM Work Group Chair, Robert Spitzer MD, had compared the "transparency" of the WHO with that of the current DSM revision Task Force, writing in "Psychiatrists Revise Diagnostic Manual – In Secret" that "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 three meetings of the Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders. But Co-ordinator, Dr Geoffrey Reed, has yet to publish a summary of the Advisory Group’s last meeting, held in Geneva, nine months ago. So I would question Dr Spitzer's view.

    The WHO seems very excited about its use of web based technology, its intended use of wiki tools and its Facebook presence, but it needs to scrutinise the way in which enquiries around the ICD-11 revision process are currently being dealt with, for otherwise these web based platforms are likely to be viewed as little more than tokenistic nods in the direction of transparency and stakeholder participation.

    Suzy Chapman
    UK patient advocate

  2. For the record, these are the questions for which the DSM-V Task Force and APA Media Relations / Communications office have thus far been reluctant to provide responses:

    1] The APA participates in the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders and in the ICD-DSM Harmonization Group. The WHO makes summaries of the proceedings of Advisory Group meetings public. The last meeting of the Advisory Group took place in early December [1-3 December 2008] but no summary of the proceedings of that meeting has been published on the WHO website.

    Given the extent of the APA's involvement in these groups and in the interests of transparency, would the DSM-V Task Force gives consideration to: making copies of the three previous summaries of the International Advisory Group meetings publicly available on the DSM-V pages of the APA's website; approaching Dr Geoffrey Reed and the WHO Secretariat in order to expedite the publication of a summary of the December 08 meeting (which took place over 6 months ago) and making the summary of this meeting and all future meetings publicly available on the DSM-V web pages.

    I should be pleased if you would provide the names of the members of the ICD-DSM Harmonization Group and that the DSM-V Task Force also gives consideration to publishing these on the DSM-V web pages.

    2] It is reported that the target date for the release of DSM-V is 2012 and that some field trials are expected to start this summer. I don't find any information on the DSM-V web pages around public consultation.

    Through what processes are patient advocacy groups/interest groups/members of the public able to register an interest as stakeholders and participate in consultations?

    Can any indication be given at this stage when consultation periods might be reached and is the Task Force planning to publish timelines for consultations within the overall production of DSM-V?

    Suzy Chapman
    UK patient advocate