APA “Monitor” articles: ICD-11 and DSM-5; Frances, Rajiv Tandon on DSM-5; iCAT Analytics

February 8, 2012 by

1] ICD-11 (with contributions from WHO’s Dr Geoffery Reed) and DSM-5 articles in February edition of American Psychological Association’s “Monitor”

2] Academic article on DSM-5 by Rajiv Tandon, MD, Professor of Psychiatry, University of Florida

3] Allen Frances (who chaired the DSM-IV Task Force), Suzy Chapman and Dr Dayle Jones on DSM-5

4] Paper: Pragmatic Analysis of Crowd-Based Knowledge Production Systems with iCAT Analytics: Visualizing Changes to the ICD-11 Ontology

 

Post #137 Shortlink: http://wp.me/pKrrB-1QW

1] Two articles in the February edition of the American Psychological Association’s “Monitor”:

American Psychological Association

Monitor

Feature, February 2012, Vol 43, No. 2

Improving disorder classification, worldwide

Rebecca A. Clay  |  February 2012

With the help of psychologists, the next version of the International Classification of Diseases will have a more behavioral perspective.

Print version: page 40

What’s the world’s most widely used classification system for mental disorders? If you guessed the Diagnostic and Statistical Manual of Mental Disorders (DSM), you would be wrong.

According to a study of nearly 5,000 psychiatrists in 44 countries sponsored by the World Health Organization (WHO) and the World Psychiatric Association, more than 70 percent of the world’s psychiatrists use WHO’s International Classification of Diseases (ICD) most in day-to-day practice while just 23 percent turn to the DSM. The same pattern is found among psychologists globally, according to preliminary results from a similar survey of international psychologists conducted by WHO and the International Union of Psychological Science.

“The ICD is the global standard for health information,” says psychologist Geoffrey M. Reed, PhD, senior project officer in WHO’s Department of Mental Health and Substance Abuse. “It’s developed as a tool for the public good; it’s not the property of a particular profession or particular professional organization.”

Now WHO is revising the ICD, with the ICD-11 due to be approved in 2015. With unprecedented input from psychologists, the revised version’s section on mental and behavioral disorders is expected to be more psychologist-friendly than ever—something that’s especially welcome given concerns being raised about the DSM’s own ongoing revision process. (See “Protesting proposed changes to the DSM”.) And coming changes in the United States will mean that psychologists will soon need to get as familiar with the ICD as their colleagues around the world…

…”Since the rest of the world will be adopting the ICD-11 when it is released in 2015, the CDC will likely make annual updates to gradually bring the ICD-10-CM into line with the ICD-11 to avoid another abrupt shift. But the differences between the DSM and the ICD may grow even greater over time, says Reed, depending on the outcomes of the ICD and DSM revision processes.”

For more information about the ICD revision, visit the World Health Organization.

Rebecca A. Clay is a writer in Washington, D.C.

Read full article here

American Psychological Association

Monitor

February 2012, Vol 43, No. 2

Print version: page 42

Protesting proposed changes to the DSM

When President David N. Elkins, PhD, and two colleagues within APA’s Div. 32 (Society for Humanistic Psychology) heard about the proposed revisions to the Diagnostic and Statistical Manual of Mental Disorders (DSM), they were alarmed. But what could three people do?

Plenty, as it turns out.

Although their original aim was simply to educate the division’s members, Elkins, Secretary Brent Dean Robbins, PhD, and student representative Sara R. Kamens soon decided to share their concerns in an open letter to the American Psychiatric Association. Thinking it would pack more punch with a few more signatures, they posted it online last October.

The response astounded them. “Within two days, we had more than 1,500 signatures,” says Elkins. So far, more than 10,000 individuals and 40 mental health organizations have signed on, and media outlets as diverse as Nature, USA Today and Forbes have covered the controversy. APA, which has no official position on the controversy, urges its members to get involved in the debate (see APA’s statement in the January Monitor, page 10).

The open letter outlines three major concerns with the proposed draft of the DSM-5, set for publication in 2013…

Read full article here

2] Article by Rajiv Tandon, MD, Professor of Psychiatry, University of Florida:

Current Psychiatry

Vol. 11, No. 02 / February 2012

Getting ready for DSM-5: Part 1

The process, challenges, and status of constructing the next diagnostic manual

Rajiv Tandon, MD  |  February 2012
Professor of Psychiatry, University of Florida, Gainesville, FL

Discuss this article at www.facebook.com/CurrentPsychiatry

Work on the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5)—scheduled to be published in May 2013—has been ongoing for more than a decade. Momentous advances in genetics and brain imaging since publication of DSM-IV in 1994 have generated optimism that an improved understanding of the neurobiologic underpinnings of psychiatric disorders might lead to a paradigm shift from the current descriptive classification system to a more scientific etiopathophysiological system similar to that used by other medical specialities.1

Some fear that any changes to our current classification system may be premature and could make an already complex system even more unwieldy.2 Scores of articles about the content and process of DSM-5 and several critiques and commentaries on the topic have been published. The American Psychiatric Association (APA) has made the DSM-5 process transparent by posting frequent updates to the DSM-5 Development Web site (www.dsm5.org), seeking feedback from the psychiatric community and the public, and presenting progress reports by members of the DSM-5 Task Force at scientific meetings.

There have been few discussions on the implications of DSM-5 from the practicing clinician’s vantage point, which I seek to present in this series of articles, the remainder of which will be published here, at CurrentPsychiatry.com…

Read on here

 

3] Allen Frances, MD, in Psychology Today and Psychiatric Times

Registration required for access to article on Psychiatric Times

DSM5 in Distress

PTSD, DSM 5, and Forensic Misuse
DSM 5 would lead to overdiagnosis in legal cases.

Allen Frances, MD | February 9, 2012

————————————————————

Documentation That DSM-5 Publication Must Be Delayed
because DSM 5 is so far behind schedule

Allen Frances, MD | February 7, 2012

Allen Frances, MD, who chaired the Task Force that had oversight of the development of DSM-IV, is a former chief of psychiatry at Duke University Medical Center and currently professor emeritus at Duke

Last week, I wrote that DSM-5 is so far behind schedule it can’t possibly produce a usable document in time for its planned publication date in May 2013.¹ My blog stimulated 2 interesting responses that illustrate the stark contrast between DSM-5 fantasy and DSM-5 reality. Together they document why publication must be delayed if DSM-5 is to be set right. The first email came from Suzy Chapman of Dx Revision Watch https://dxrevisionwatch.wordpress.com

Re DSM-5 delays, here is a telling statement made by Dr Darrel Regier, its Vice Chair, on March 9, 2010: “We have just released draft criteria on a website on February 10th at dsm5.org. And we’ll be having a field trial starting in July of this year. We’ll then have another revision based on field trial results going into a second revision or second field trial in July of 2011. As a result, we will not have our final recommendations for the DSM-V probably until early 2011.”  She continues,

Please note the dates. Dr Regier’s promised timetable has been missed by more than a year—we still don’t have final recommendations.

Dayle Jones, PhD, is head of the Task Force of the American Counseling Association that monitors DSM-5. She sent in a timeline comparing DSM-5 promised deadlines with actual delivery dates:

The DSM-5 academic/large clinic field trials were designed to have two phases. Phase 1 was first scheduled to begin in June 2009, but had to be postponed for a year because the criteria sets were not ready. The timetable for field trial completion was unrealistic from the start and not surprisingly the end dates have been repeatedly postponed from early 2010 to early 2011, and we’re now already into 2012 with no end in sight. Phase 2, originally scheduled for September 2011 to February 2012, was to re-test those diagnoses that did poorly in Phase 1 and had to be revised. The phase 2 trials were quietly canceled. We still don’t have results from the phase 1 field trials, but the APA leadership has warned us that we must accept reliabilities that are barely better than chance. Without the second stage, uncorrected problem diagnoses will be included in DSM-5.

The separate clinician field trial has been an even worse disaster. Clinicians were originally scheduled to be trained by August 2010, enrolling patients no later than late November 2010, and ending by February, 2011. Training was finally completed 18 months late in December 2011, which means the earliest these trials could possibly end is June 2012—well after most DSM-5 final decisions will have been made. Furthermore, of the over 5000 clinicians who registered to participate, only 70 (1.4%) have begun enrolling patients for the field trial. My guess is that like academic/large clinic Phase 2 field trial, poor planning and disorganization will force cancellation.

Dr Jones concludes,

In my opinion, there is no process and not enough time left to ensure that DSM-5 will attain high enough quality to be used by counselors. Fortunately, we can always bypass it by using ICD-10-CM.

Sobering stuff. Its constant procrastination has at last caught up with DSM-5. Having fallen so far behind schedule, DSM-5 abruptly dropped the second stage of field-testing—without public comment or justification or discussion of what would be the effects on quality and reliability. In fact, the second stage of the field trials was perhaps the most crucial step in the entire DSM-5 process—a last chance for sorely needed quality control to bring a lagging DSM-5 up to acceptable standards. The DSM-5 proposals that were weak performers in the first stage were supposed to be rewritten and retested in the second to ensure that they deserved to be included in the manual.

The American Psychiatric Association (APA) is now stuck with the most unpalatable of choices—protecting the quality of DSM-5 versus protecting the publishing profits to be gained by premature publication. Given all the delays, it can’t possibly do both—a quality DSM-5 cannot be delivered in May 2013.

All along, it was predictable (and predicted), that DSM-5 disorganization would lead to a mad, careless dash at the end. The DSM’s have become far too important to be done in this slapdash way—the high cost to users and the public of this rush to print is unacceptable. Unless publication is delayed, APA will be offering us official DSM-5 criteria that are poorly written, inadequately tested, and of low reliability. The proper alternative is clear: APA should delay publication of DSM-5 until it can get the job done right. Public trust should always trump publishing profits.

Let’s close with a worrying and all too illustrative quote from Dr Regier, just posted by Scientific American.² When asked if revisions to criteria in DSM-5 could be completed by the end of this year, he said “there is plenty of time.” I beg to differ—there is not nearly enough time if the changes are to be done based on a much needed independent scientific review and are to be tested adequately in Phase 2 of the field trial. Without these necessary steps DSM-5 will be flying blind toward the land of unintended consequences.

References
1. Frances A. APA should delay publication of DSM-5. January 31, 2012. Psychiatr Times. http://www.psychiatrictimes.com/blog/frances/content/article/10168/2024394

2. Jabr F. Redefining autism: will new DSM-5 Criteria for ASD exclude some people? January 30, 2012. Sci Am. http://www.scientificamerican.com/article.cfm?id=autism-new-criteria  Accessed February 7, 2012.

 

4] Paper: Pragmatic Analysis of Crowd-Based Knowledge Production Systems with iCAT Analytics: Visualizing Changes to the ICD-11 Ontology

     Pragmatic Analysis – iCAT Analytics 2012

Pragmatic Analysis of Crowd-Based Knowledge Production Systems with iCAT Analytics: Visualizing Changes to the ICD-11 Ontology

http://kmi.tugraz.at/staff/markus/documents/2012_AAAI_iCATAnalytics.pdf

Jan P¨oschko and Markus Strohmaier, Knowledge Management Institute, Graz University of Technology, Inffeldgasse 21a/II, 8010 Graz, Austria

Tania Tudorache and Natalya F. Noy and Mark A. Musen, Stanford Center for Biomedical Informatics Research, 1265 Welch Road, Stanford, CA 94305-5479, USA

Abstract

While in the past taxonomic and ontological knowledge was traditionally produced by small groups of co-located experts, today the production of such knowledge has a radically different shape and form. For example, potentially thousands of health professionals, scientists, and ontology experts will collaboratively construct, evaluate and  maintain the most recent version of the International Classification of Diseases (ICD-11), a large ontology of diseases and causes of deaths managed by the World Health Organization. In this work, we present a novel web-based tool-iCAT Analytics-that allows to investigate systematically crowd-based processes in knowledge-production systems. To enable such investigation, the tool supports interactive exploration of pragmatic aspects of ontology engineering such as how a given ontology evolved and the nature of changes, discussions and interactions that took place during its production process. While iCAT Analytics was motivated by ICD-11, it could potentially be applied to any crowd-based ontology-engineering project. We give an introduction to the features of iCAT Analytics and present some insights specifically for ICD-11.

Filed under Allen Frances, American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-5 field trials, iCAT, ICD-11 Tagged with , , , , , , , , ,

CFSAC November 8-9, 2011 meeting: Minutes and Recommendations to HHS posted

January 14, 2012 by

CFSAC November 8-9, 2011 meeting: Minutes and Recommendations to HHS posted

Shortlink Post #129: http://wp.me/pKrrB-1Fn

The fall meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) took place on November 8-9, 2011.

Minutes and Committee’s Recommendations to HHS have now been posted on the CFSAC website.

Chronic Fatigue Syndrome Advisory Committee (CFSAC) 

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS). These include:

• factors affecting access and care for persons with CFS;
• the science and definition of CFS; and
• broader public health, clinical, research and educational issues related to CFS.

Administrative and management support for CFSAC activities is provided by the Office of the Assistant Secretary for Health (OASH). However, staffing will continue to be provided primarily from the Office on Women’s Health, which is part of OASH.

Dr. Nancy C. Lee, Deputy Assistant Secretary for Health – Women’s Health, is the Designated Federal Officer for CFSAC.

The Meetings page is here

               Minutes Day One CFSAC Fall 2011 meeting

               Minutes Day Two CFSAC Fall 2011 meeting

Presentations, Public Testimony and links for Videos for Day One and Day Two

 

The Agenda item with the most relevance for this site was the issue of the current proposals for chapter placement and coding for Chronic fatigue syndrome in the forthcoming US specific ICD-10-CM, the proposals presented for consideration at the September meeting of the ICD-9-CM Coordination and Maintenance Committee on behalf of the Coalition for ME/CFS, and an alternative proposal presented by NCHS.

See this Dx Revision Watch post (Post #118, December 27, 2011) for a report on the Fall 2012 Meeting presentation by Donna Pickett (NCHS) and discussions of proposals for ICD-10-CM:

CFSAC November 2011 meeting: videos, presentations and Day One Agenda item:

International Classification of Diseases – Clinical Modification (ICD-CM): Presentation by Donna Pickett, RHIA, MPH, National Center for Health Statistics (NCHS)

 

Recommendations out of the Fall 2011 CFSAC Meeting

CFSAC Recommendations – November 8-9, 2011

The specific recommendations articulated by the Committee are:

1. This recommendation addresses the process by which CFSAC transmits recommendations to the Secretary and the Secretary communicates back to CFSAC whether or not a recommendation was acted upon. CFSAC recommends that this process be transparent and clearly articulated to include regular feedback on the status of the committee’s  recommendations. This communication could originate directly from the Office of the Secretary or be transmitted via the relevant agency or agencies.

2. CFSAC recommends to the Secretary that the NIH or other appropriate agency issue a Request for Applications (RFA) for clinical trials research on chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

3. CFSAC would like to encourage and support the creation of the DHHS Interagency Working Group on Chronic Fatigue Syndrome and ask this group to work together to pool resources that would put into place the “Centers of Excellence” concept that has been recommended repeatedly by this advisory committee. Specifically, CFSAC encourages utilizing HHS agency programs and demonstration projects, available through the various agencies, to develop and coordinate an effort supporting innovative platforms that facilitate evaluation and treatment, research, and public and provider education. These could take the form of appropriately staffed physical locations, or be virtual networks comprising groups of qualified individuals who interact through a variety of electronic media. Outreach and availability to underserved populations, including people who do not have access to expert care, should be a priority in this effort.

4. This multi‐part recommendation pertains to classification of CFS in ICD classification systems:

a) CFSAC considers CFS to be a multi‐system disease and rejects any proposal to classify CFS as a psychiatric condition in the U.S. disease classification systems.

b) CFSAC rejects the current classification of CFS in Chapter 18 of ICD‐9‐CM under R53.82, chronic fatigue unspecified, chronic fatigue syndrome, not otherwise specified.

c) CFSAC continues to recommend that CFS should be classified in ICD‐10‐CM in Chapter 6 under Diseases of the Nervous System at G93.3 in line with ICD‐10, the World Health Organization, and ICD‐10‐CA, the Canadian Clinical Modification and in accordance with CFSAC’s recommendations of August 2005 and May 2011. CFSAC rejects CDC’s National Center for Health Statistics Option 2 and recommends that CFS remain in the same code and the same subcode as myalgic encephalomyelitis because CFS includes both viral and non‐viral triggers.

d) CFSAC recommends that an “excludes one” [sic *] be added to G93.3 for chronic fatigue, R53.82, and neurasthenia, F48.8. CFSAC recommends that these changes be made in ICD‐10‐CM prior to its rollout in 2013.

This final recommendation was also provided to the National Center for Statistics at the CDC prior to the November 18, 2011 deadline for comments along with the following rationale:

We feel that the interests of patients, the scientific and medical communities, continuity and logic are best served by keeping CFS, (B)ME (Benign Myalgic Encephalomyelitis) and PVFS (Post Viral Fatigue Syndrome) in the same broad grouping category. Current scientific evidence would indicate there are more similarities between the three entities than there are differences. Whether they are synonyms for the same underlying concept, disease entities and sub‐entities, or merely the best coding guess is unclear. In reality, any or all of the above may be correct. While the  relationship between CFS, B(ME) and PVFS is not stated, that they are grouped together in ICD 10 (WHO) would indicate some rationale for a connection. Our understanding is that this association will be maintained in the ICD 11, which may also include further description of the relationship. Exclusions specific to chronic fatigue (a symptom present in many illnesses) and neurasthenia (not a current diagnosis) also seem to be under consideration for ICD 11.

*Ed: Should be “Excludes1”. For definitions for “Excludes1” and “Excludes2” see Post #118

               November 2011 Recommendations Letter to the Secretary (PDF 31 KB)

               November 2011 CFSAC Recommendations Chart (PDF 138 KB)

The Minute for Ms Pickett’s presentation “International Classification of Diseases—Clinical Modification (ICD‐CM) Donna Pickett, National Center for Health Statistics (NCHS/Centers for Disease Control and Prevention)” and Committee discussions in response to that presentation can be found on Pages 4-10 of the PDF for Minutes Day One (November 8, 2011).

Video of presentation in Post #118. Ms Pickett’s presentation slides here in PDF format.

The Minute for the proposal and unanimous approval of a revised and expanded Recommendation to HHS on the coding of CFS in ICD-10-CM can be found on Pages 43-44 of the PDF for Minutes Day Two (November 9, 2011). Video in Post #118.

As reported in Post #118, following the September 14 meeting of the ICD-9-CM Coordination and Maintenance Committee, NCHS had invited comments from stakeholders on the proposals in Option 1 (presented by the Coalition for ME/CFS) and Option 2 (alternative proposals by NCHS).

The closing date for comments was November 18, 2011.

A decision was expected before the end of December but since any decision that might have been reached on these proposals has yet to be announced, I have raised some queries with Ms Pickett around the decision making process (see Post #118). I will update when a response has been received from Ms Pickett’s office or a public announcement made.

 

Related post

CFSAC November 2011 meeting: videos, presentations and Day One Agenda item: 

International Classification of Diseases – Clinical Modification (ICD-CM): Presentation by Donna Pickett, RHIA, MPH, National Center for Health Statistics (NCHS), November 27, 2011

Filed under CFSAC meetings, Clinical Modification, Coalition4ME/CFS, ICD-10, ICD-10-CM, ICD-11, ICD-11 Alpha Draft, ICD-11 revision docs, WHO (World Health Organization) Tagged with , , , , , , , , ,

DSM 5 Censorship Fails: Support From Professionals and Patients Saves Free Speech: Allen Frances

January 12, 2012 by

DSM 5 Censorship Fails: Support From Professionals and Patients Saves Free Speech by Allen Frances

Post #127 Shortlink: http://wp.me/pKrrB-1ER

Psychology Today

DSM5 in Distress
The DSM’s impact on mental health practice and research.
by Allen Frances, M.D. (Chair, DSM-IV Task Force and currently professor emeritus at Duke.)

DSM 5 Censorship Fails
Support From Professionals and Patients Saves Free Speech

Allen Frances, M.D. | January 12, 2012

Last week I described the plight of Suzy Chapman, a well respected UK patient advocate forced to change the domain name of her website by the heavy handed tactics of the publishing arm of the American Psychiatric Association. The spurious legal excuse was commercial protection of the ‘DSM 5’ trademark; the probable intent was to stifle one of the internet’s best sources of DSM and ICD information. This bullying could not have come at a worse time – just as final decisions are being made on highly controversial DSM 5 proposals and with the third and final draft due for release this spring. This is precisely when a ragged and reckless DSM 5 can most benefit from the widest and most open discussion.

Though APA’s trademark claims were patently absurd, Ms Chapman did not have the necessary resources for a protracted fight against a well staffed legal department. Visits plummeted drastically to her new web address (reaching a nadir of just one hit per day) and the site faced months of slow recovery. But the good news is that APA’s clumsy attempt at censorship has backfired, free speech will prevail, and the site is now more popular than ever.

Suzy Chapman writes:

“I want to thank the many psychiatrists, allied mental health professionals, and science writers who have spoken out in opposition to what they see as arrogant censorship on the part of the American Psychiatric Association. Their outpouring of concern has generated considerable interest on websites, blogs and social media platforms. This has increased the traffic on my site by many hundreds of visitors per day. The support of professionals and patient groups illustrates the power of the internet to resist suppression of patient advocacy and to promote free speech.”

“The purpose of my site is to raise public and stakeholder awareness of the forthcoming revisions of both DSM-5 and ICD-11. I endeavor to provide timely and accurate information about DSM-5, including: internet commentaries on proposals; flag ups of journal papers and editorials; news releases and other media statements; and updates on changes to the DSM-5 timeline. I also cover progress on ICD-11, including activities of the Revision Steering Group; documents, presentations and videos; and updates on the ICD-11 timeline. I report on developments with the forthcoming US ICD-10-CM and proceedings of a US federal Advisory Committee to HHS in relation to coding issues. Finally, I follow the advocacy campaigns and initiatives relating to DSM and ICD classificatory issues. My objective is to help stakeholders understand the issues so that they may provide the most useful feedback to the revision process.”

“Despite all the controversies, despite the calls for independent review, despite all the delays and limitations of its field trials, DSM-5 hurtles forward towards publication in May 2013. During this final, decisive year of DSM 5 decision making, I shall continue to publish information, updates and commentaries to promote the widest possible dialogue around the drafting of this most important publication. My new site, ‘Dx Revision Watch – Monitoring the development of DSM-5, ICD-11, ICD-10-CM’ can be found at: https://dxrevisionwatch.wordpress.com/

“This experience has taught me that the APA trademark claims were not only misguided, but probably legally indefensible. ‘Nominative fair use’ is permitted those who are publishing criticism within texts if use of the trademark is relevant to the subject of discussion or necessary to identify the product, service, or company. Courts have found that non-misleading use of trademarks in the domain names of critical websites (like walmartsucks.com) is to be considered ‘fair use’ by non-commercial users – so long as there is no intent to misrepresent or confuse visitors to the site and when it is clear that the site owner is not claiming endorsement by, or affiliation to, the holder of the mark.”

“Everything I have read suggests that my clearly non-commercial use of my previous subdomain name (dsm5watch.wordpress.com) – with its prominent disclaimer and no intent to mislead – falls well within the concept of ‘fair use’. This then raises the obvious question – what grounds did APA have for serving me with demands and threats of possible legal action? Several people have independently sent me materials on ‘SLAPP’ lawsuits (strategic lawsuit against public participation). These are threats of legal action intended to censor, intimidate, and silence critics by burdening them with the cost of a legal defense – so that they will abandon their criticism or opposition.”

“If you are interested in learning more about ‘SLAPP’ lawsuits, there is a good summary at
http://en.wikipedia.org/wiki/Strategic_lawsuit_against_public_participation

“The Electronic Frontier Foundation is also a very useful resource for legal advice on trademark law for blog and website owners. See http://www.eff.org/issues/bloggers/legal/liability/IP

“The surprisingly spirited and unanimous internet reaction provoked by the APA’s actions will probably discourage it from future pursuit of other ‘fair use’ site owners. I certainly hope so. But if other site owners are issued inappropriate ‘cease and desist’ claims, I do hope they have the resources to seek legal advice before complying.”

“I am very grateful for all the support received in the past week and the many emails thanking me for the work I do. It is gratifying to hear that not only do patients, caregivers and patient organizations rely on my carefully researched and presented content, but that so many professionals are also following my site and find it useful. This experience has been stressful, but I can now say confidently that APA’s actions have definitely backfired –  the many hundreds of additional viewers discovering the site each day will expand its audience and its usefulness.”

All of us owe great thanks to Ms Chapman and to the internet community whose ringing endorsement has allowed her not only to maintain, but also to enlarge, her readership. Ms Chapman will continue to provide the field with the most current and most accurate reporting on DSM 5 during its endgame. I strongly recommend her website as the best clearinghouse for information on DSM 5.

I join Ms Chapman in hoping that this embarrassing episode will discourage APA from all future efforts at abusive censorship – whether they are related to trademark, copyright, or confidentiality agreements. The field must remain vigilant in its efforts to contain APA commercialism and persistent in trying to penetrate APA’s secrecy and inbred decision making. APA must finally come to realize that DSM 5 is an open public trust, not a private business enterprise.

 

Related material:

DSM 5 A Public Trust Or An APA Cash Cow? Commercialism And Censorship Trump Concern For Quality, Allen Frances, M.D., Psychology Today, January 03, 2012

Further media coverage of the APA cease and desist v DSM-5 Watch website issue collated here:  Post #123

Article on “cease and desist” issue: Pity the poor American Psychiatric Association, Parts 1 and 2 by Gary Greenberg

 

Legal information and resources for bloggers and site owners:

1] Wipedia article: Cease and desist
http://en.wikipedia.org/wiki/Cease_and_desist

2] Wipedia article: Strategic lawsuit against public participation (SLAPP)
http://en.wikipedia.org/wiki/Strategic_lawsuit_against_public_participation

3] Electronic Frontier Foundation (EFF)
http://en.wikipedia.org/wiki/Electronic_Frontier_Foundation
http://www.eff.org/

EFF Bloggers’ Rights
https://www.eff.org/bloggers

EFF Legal Guide for Bloggers
https://www.eff.org/issues/bloggers/legal

4] Chilling Effects
http://en.wikipedia.org/wiki/Chilling_Effects_(group)

http://chillingeffects.org/

Chilling Effects FAQ on Trademark Law
http://www.chillingeffects.org/trademark/faq.cgi#QID251

Chilling Effects on Protest, Parody and Criticism Sites
http://www.chillingeffects.org/protest/

5] U.S. Trademark Law, Rules of Practice & Federal Statutes , U.S. Patent & Trademark Office, November 2011 http://www.uspto.gov/trademarks/law/tmlaw.pdf

Filed under Allen Frances, American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 draft proposals, DSM-5 in the media, DSM-V, ICD-10-CM, ICD-11 Tagged with , , , , , , , , ,

Pity the poor American Psychiatric Association, Parts 1 and 2: Gary Greenberg

January 6, 2012 by

Pity the poor American Psychiatric Association, Parts 1 and 2: Gary Greenberg

Post #124 Shortlink: http://wp.me/pKrrB-1Ca

On January 03, I reported that the Licensing and Permissions department of American Psychiatric Publishing, A Division of American Psychiatric Association, served me with two “cease and desist” letters, just before Christmas, claiming use of the registered trademark DSM 5 within my site’s subdomain name was improper, in violation of United States Trademark Law, and that my unauthorized actions may subject me to contributory infringement liability including increased damages for wilful infringement.

I was requested to immediately cease and desist any and all use of the DSM 5 mark and that the DSM 5 mark is removed from the domain name http://dsm5watch.wordpress.com/.

Whether American Psychiatric Publishing might be considered to have a case against me or whether the use of the DSM 5 mark within my subdomain name might be found by a court to be legitimate under “fair use” – given that my site is non commercial, carries a clear disclaimer, with no intent to confuse, mislead or misrepresent my relationship with the APA or its publishing arm – I elected to change the site’s URL the following day.

The second letter demanded that I cease and desist immediately any and all use of the “DSM 5 mark” in the domain names of three additional internet platforms.

I do not own any of these three platforms or have any responsibility for them.

Evidently American Psychiatric Publishing’s Licensing and Permissions department omitted to establish ownership before issuing me with “cease and desist” demands and threats of legal action, on behalf of the American Psychiatric Association. I have received no apology nor explanation for their error. (I am not in a position to disclose the content of the second “cease and desist” letter since it relates to matters concerning a third party.)

Allen Frances, MD, professor emeritus at Duke, chaired the Task Force that had oversight of the development of DSM-IV and has been a fierce critic of the revision process towards the forthcoming edition of the Diagnostic and Statistical Manual of Mental Disorders, DSM-5. On Tuesday, Frances publicly supported my position in a commentary published on his DSM5 in Distress blog, hosted at Psychology Today.

Other blogging psychiatrists, allied mental health professionals and the author, Gary Greenberg, are supporting Frances in what they see as a heavy-handed, arrogant, bizarre and politically damaging move on the part of American Psychiatric Publishing’s Licensing and Permissions department in exercising trademark rights and making threats of legal action against a non commercial, responsible UK patient advocate who provides information and publishes commentary around the revision of two internationally used classification systems.

Commentaries from bloggers are being collated in this post:

Media coverage: American Psychiatric Association (APA) ”cease and desist” v DSM-5 Watch website; Legal information and resources for bloggers and site owners

Today, Gary Greenberg, author of Manufacturing Depression, and Inside the Battle to Define Mental Illness, Wired, December 27, 2010, has published a two part article on his website.

Read Part 1 here:

Pity the poor American Psychiatric Association, Part 1

Read Part Two, here, or published below, with the author’s permission:

Pity the American Psychiatric Association, Part 2

Gary Greenberg Blog

http://www.garygreenbergonline.com/

January 5th, 2012

In the last installment, we found out that the APA is trying to thread a camel through the eye of a needle. In their own view, they have to revise the DSM. To do this, they have to address the reification problem – i.e., that many of us, civilians and clinicians alike, have taken the DSM too seriously and treated the disorders it lists as actual diseases rather than fictive placeholders. To address it, they have to admit that it is a problem, and that they don’t have a solution. They have to fix the plane while it is airborne, but they don’t have the tools or the knowhow to do so, and the more it becomes clear that the plane is in trouble, and the more the mechanics are swearing and banging belowdecks, the more likely it is that the passengers will find out and start asking for a quick landing and a voucher on another airline.

So it is very important to try to keep the passengers in the dark as long as possible. Or, to put it another way, the APA has a product to protect, and the best way to do that, from a corporation’s point of view, is to control the narrative, as the pundits say, about the DSM.

Now, even before the recent events, which I’ll get to in a second, I knew this, because last year I wrote an article about the DSM revision for Wired about the argument between Allen Frances and Michael First, the major players in the DSM-IV revision, and Darrel Regier and David Kupfer, their counterparts on DSM-5. The article was no great shakes, just your usual lunchbucket magazine piece, fair and balanced and bland and forgettable as a soy hot dog with French’s mustard on it. I think Frances came out a little better, but that’s because I think he’s closer to the truth of the matter, and, as one of his colleagues has reminded me about a million times, he’s retired, so he can afford to speak truth to power. And the APA sounded at least reasonable in its willingness to acknowledge that the DSM is more provisional than it is generally made out to be.

Anyway, the forgettable magazine piece is in the process of becoming a book which will probably also be forgettable. And so I went back to my transcripts of conversations with the APA/DSM folks and of course found out all the questions I’d failed to ask and the points I’d failed to get clarified. So I emailed the APA pr apparatchicks and asked them to enlighten me. When exactly did the APA stop taking money from the drug companies for their educational programs, and how exactly was the embargo worded? And did I understand Regier correctly about a highly technical point that I won’t bore you with.

Here’s what I got back for a response.

Dear Gary,

We have received several requests from you for access to APA experts and positions on issues related to the DSM for the book you’re writing. I wanted you to know that we will not be working with you on this project. Last year we gave you free access to several of our officers and DSM experts for the article you wrote for Wired. In spite of the fact that we went to considerable lengths to work with you, the article you produced was deeply negative and biased toward the APA. Because of this track record, we are not interested in working with you further as we have no reason to expect that we would be treated any more fairly in your book than we were in the Wired article.

Now, why the APA would want to hand me such first-rate evidence of its own paranoia – and spare me having to listen to their talking points, not to mention preemptively decline to have a crack at responding to my book– is beyond me. It’s as incomprehensible as the letter itself, or at least the part where they complain that I was “biased toward” them. But I gather they think that they will make it harder for me to write my book, that maybe if they don’t cooperate I won’t do it. It is in any event evidence of an awfully thin skin, and of a bunker mentality. More disturbingly, it is evidence that they don’t really take their public trust too seriously. Especially when you contrast this to the National institutes of Mental Health, and its director Tom Insel, of whose work I’ve been much more directly critical, and who took the time to read it, and who still bent over backwards to get me an hour of face time that was cordial and fascinating. It’s enough to make you a fan of the government.

So to the recent events. Suzy Chapman is a patient advocate from the UK. Her website was an excellent compendium of information, archival material, reports, and, yes, criticism of the DSM-5. I have been using it in my research and admiring her tenacity and her fairmindedness. She has opinions but they are way in the background and neither shrill nor strident.

Chapman called her website DSM-5 and ICD Watch: Monitoring the Development of DSM-5, ICD-11 and ICD-10-CM. (The ICD’s are diagnostic systems run by the World Health Organization, and they are also under revision), and her subdomain name was

http://dsm5watch.wordpress.com

She also put in a disclaimer, made it clear that she had nothing to do with APA, that she wasn’t dispensing medical, legal, or technical advice. But that didn’t stop the APA from going after her. Not long after they got their DSM-5 trademark approved, and right before Christmas, they sent her this nice holiday card, which she’s kindly allowed me to post here, with her redactions.

Name: Redacted
Email: Redacted
Message: December 22, 2011

Suzy Chapman

http://dsm5watch.wordpress.com/

RE: DSM 5 Trademark Violation

Dear Ms. Chapman:
It has come to our attention that the website http://dsm5watch.wordpress.com/ is infringing upon the American Psychiatric Association’s trademark DSM 5 (serial number 85161695) and is in violation of federal law by using it as a domain name.

According to our records, the American Psychiatric Association has not authorized this use of the DSM 5 trademark. Consequently, this use of the DSM 5 mark is improper and is in violation of United States Trademark Law. Your unauthorized actions may subject you to contributory infringement liability including increased damages for willful infringement. We request that you immediately cease and desist any and all use of the DSM 5 mark. Furthermore, we request that the DSM 5 mark is removed from the domain name http://dsm5watch.wordpress.com/ . The American Psychiatric Association has a good-faith belief that the above-identified website’s use of the DSM 5 name and marks is not authorized by the American Psychiatric Association, its agents, or the law. I declare under penalty of perjury that the foregoing is true and correct and that I am authorized to act on behalf of the American Psychiatric Association.

Please confirm, within the next ten (10) days of the date of this letter, that you will stop using our trademark in http://dsm5watch.wordpress.com/ , and provide documentation confirming that you have. Any further use will be considered an infringement.

Thank you for your prompt cooperation in resolving this issue.

Very truly yours,

[Redacted]
Licensing and Permissions Manager American Psychiatric Publishing, A Division of American Psychiatric Association
1000 Wilson Boulevard Suite 1825 Arlington, VA 22209
E-mail: Redacted

Chapman, not in a position to fight, complied almost immediately. Her website is now available at

https://dxrevisionwatch.wordpress.com/

where you can also read about this kerfuffle in more detail.

Why the APA would make themselves into a Goliath is not clear to me. The DSM offers Paranoid Personality Disorder, but this episode makes me wish Frances hadn’t shied away from his proposal for a Self-Defeating Personality Disorder. Because it is not clear to me how they win this one. Not that I really care, at least not about the APA’s fortunes, but are they trying to prove Frances right about his recent, somewhat incendiary, claim that the APA no longer deserves the DSM franchise?

I did ask one of the APA’s trustees about this. He wrote:

As for whether the intellectual property angle was driving them to crush the lady in Great Britain or their wanting to crush her because she was being critical, I think when the history is finally known, it will be the former. Maybe we can think of someone using “DSM-5″ who is friendly and note the reaction.

I do like this idea of conducting an experiment. And he may well be correct, that this is the APA worrying about its intellectual property rather than just trying to make Suzy Chapman miserable or squash dissent. Will they go after the sites that have popped up predictably in the wake of publicity of their enforcement action, like www.dsm5sucks.com and the twitter account @dsm5nonsense (whose owner dares the APA to come after them)? But in the meantime, this only proves two points:

First, this organization is at least terribly tone deaf. Going after Suzy Chapman is sort of like Lowe’s yanking its ads from a tv show depicting Muslims as normal people – a hugely blunderous action taken to please a tiny constituency, which can’t possibly earn them anything but scorn and opprobrium. Either they don’t know how they come off or they don’t care. Either way, it’s pretty disturbingly arrogant behavior for an organization that has so much to say about how public money is spent.

Second, the APA is a corporation that, like any other, will do anything to protect itself from harm, real or imagined. And it spends a lot of time imagining dangers. That’s probably because it knows its primary product – the DSM, which accounts for ten percent of its income and a great deal of its clout – is faulty, and it knows that it doesn’t quite know how to fix it without risking making it much much worse.

[Ends]

Legal information and resources for bloggers and site owners:

1] Wipedia article: Cease and desist
http://en.wikipedia.org/wiki/Cease_and_desist

2] Wipedia article: Strategic lawsuit against public participation (SLAPP)
http://en.wikipedia.org/wiki/Strategic_lawsuit_against_public_participation

3] Electronic Frontier Foundation (EFF)
http://en.wikipedia.org/wiki/Electronic_Frontier_Foundation
http://www.eff.org/

EFF Bloggers’ Rights
https://www.eff.org/bloggers

EFF Legal Guide for Bloggers
https://www.eff.org/issues/bloggers/legal

4] Chilling Effects
http://en.wikipedia.org/wiki/Chilling_Effects_(group)
http://chillingeffects.org/

5] U.S. Trademark Law, Rules of Practice & Federal Statutes, U.S. Patent & Trademark Office, November 2011 http://www.uspto.gov/trademarks/law/tmlaw.pdf

Filed under Allen Frances, American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-5 in the media, ICD-11, ICD-11 Alpha Draft Tagged with , , , , , , , , , , ,

Psychiatric Manual Revision Pushes Ahead Amid Continued Concerns (APA issues update on status of DSM-5)

November 24, 2011 by

Psychiatric Manual Revision Pushes Ahead Amid Continued Concerns (APA issues update on status of DSM-5)

Post #115 Shortlink: http://wp.me/pKrrB-1qV

Wall Street Journal Health Blog

WSJ’s blog on health and the business of health

Psychiatric Manual Revision Pushes Ahead Amid Continued Concerns

Shirley S. Wang | November 23, 2011

The American Psychiatric Association’s years-long efforts to revamp its big book of diagnoses has been fraught with controversy.

Critics have said that the committee charged with the fifth full revision of the Diagnostic and Statistical Manual for Mental Disorders, known as the DSM, is being too secretive and trying to make too many changes, among other concerns.

Read full article

On November, 23, the American Psychiatric Association posted a statement “Update on the Status of DSM-5” (dated November 22, 2011) on its main website.

Open PDF here: APA Update on the Status of DSM-5 11.22.11

or open on the APA’s website here

Text version follows:

APA Provides Update on Status of DSM-5

The development of DSM-5, more than a decade in process, has been the object of immense public and professional interest. APA hopes that the following information about the process and substance of the emerging diagnostic manual—which will be published in 2013 and at this point is by no means a finished product—will be useful and clarifying. Certainly, everyone with an interest in DSM-5 should visit its open access Web site, www.dsm5.org/Pages/Default.aspx, which has comprehensive information about the developing manual.

The process of developing DSM-5 began in 1999, when APA and the National Institute on Mental Health (NIMH) convened a conference to begin creating a research agenda for the new diagnostic manual. In 2002, APA published A Research Agenda for DSM-5. In the ensuing years, APA worked with multiple agencies—NIMH, the World Health Organization (WHO), the World Psychiatric Association, the National Institute on Drug Abuse, and the National Institute on Alcohol Abuse and Alcoholism—involving hundreds of participants and resulting in hundreds of publications and monographs, most of which are available on the DSM-5 Web site, regarding current state of knowledge, gaps in research, and recommendations for further research.

The DSM-5 Task Force was formed in 2007, with 13 work groups composed of world-renowned leaders in psychiatric research, diagnosis, and treatment. Since then, the 160 members of the task force and work groups have reviewed more than a decade of research on specific topics and diagnoses under consideration for the new manual. APA granted work group members permission to publish their literature reviews, and nearly all have been published in peer-reviewed journals (again, many of them available for public review on the DSM-5 Web site). In 2009 guidelines were developed to ensure the standardization of presentations by all work group members as they prepared draft diagnostic criteria and rationales for task force review.

These guidelines were subsequently adopted to facilitate reviews by the Scientific Review Committee.

Importantly, members of the work groups are not APA employees, are not under contract with APA, and are not paid by APA. They are free to leave the work group if at any time they are not satisfied that the process is unbiased or if they believe the results are lacking in scientific integrity.

Work group members come from widely diverse backgrounds and represent academic and mental health institutions throughout the world. Ninety-seven members are psychiatrists, 47 are psychologists, two are pediatric neurologists, three are statistician/epidemiologists, and there is one representative each from pediatrics, social work, pediatric nursing, speech and hearing specialties, and consumer groups. There are also more than 300 outside advisors selected for their particular expertise. Together, all of these professionals have every incentive to ensure the work, and the ultimate product, is based on science and empirical evidence.

Moreover, APA has welcomed the public’s input by making all of the drafts of the evolving document available on the DSM-5 Web site. The drafts that APA has put out for review by the public are posted to elicit comments from others in the field and from patients and family members who may be impacted by changes. APA has received through the Web site alone more than 10,000 comments—each of which has been considered and evaluated by the work groups.

The task force is working on including “dimensional and cross-cutting assessments” in order to diagnose psychiatric disorders in a more detailed and nuanced way and to recognize the frequent comorbidities that exist with many mental illnesses. The measurement instruments used in these assessments are modeled on proven instruments, such as the NIH-developed Patient Reported Outcome Measurement Information System (PROMIS), the PHQ-9 for Major Depression, PHQ-8 for somatic symptoms, the Swanson SNAP scale for attention, the Stringaris scale from NIMH for irritability, and the Altman scale for bipolar disorder. All of these scales are being subjected in field trials to extensive tests of reliability and clinical utility.

The definition of mental disorder used in DSM-IV is undergoing a thorough review by the DSM-5 Task Force. Throughout the review process, APA has assimilated input from around the world and across disciplines and is reformulating its recommendations for the definition of a mental disorder. The task force continues to work toward a definition of mental disorder that is evidence-based and acceptable to the mental health community at large, and APA welcomes comments on the revised definition when it is posted in the third round of revisions expected to come out in the spring.

Throughout this process, APA has been committed to transparency. DSM-5 Task Force and work group members have presented and participated in open discussions at hundreds of psychiatric and other major medical meetings around the world and have received permission whenever requested to publish on the proposed changes in DSM-5 without regard to their point of view. (A list of those meetings and publications is available for review on the DSM-5 Web site.)

APA has asked those involved in the DSM-5 process to sign a member acceptance form that has been the subject of some misunderstanding. The confidentiality portion of the member acceptance form is not intended to promote secrecy, but rather to facilitate the verbal process of deliberation. Most, if not all, scientific institutions—including the National Institutes of Health, the Institute of Medicine, WHO, and all scientific journal preparations and reviews—share results of research and explanations for their conclusions, but do not fully open the deliberative process itself for comment. This is crucial in order to ensure the free-exchange of ideas during deliberation.

The Scientific Review Committee was appointed by the Board of Trustees of APA and charged with the ultimate approval of the final DSM-5 recommendations. As part of that charge, the committee will evaluate the strength of the evidence in support of proposed revisions. This separate peer-review process will provide important guidance to the Board. The committee’s contributions will be reflected in the final criteria of DSM-5. Another committee, the Clinical and Public Health Committee, has recently been appointed by the Board to consider clinical utility and public health issues that are not being reviewed by the Scientific Review Committee.

In addition, APA has worked with WHO on an ongoing basis to develop harmonization between disorders included in both DSM-5 and ICD-11. Public comment has twice been solicited on proposed diagnostic criteria, and a third public comment period is planned for 2012.

APA believes the extensive process of development for DSM-5 will result in a scientifically and clinically useful new edition of the diagnostic manual, and the Task Force is indebted to the hundreds of experts who are contributing to its content.

November 22, 2011

Related information:

1] DSM-5 Development website

2] American Counseling Association releases letter: Calls for external review of DSM-5

3] Coalition for DSM-5 Reform Tab page on Dx Revision Watch site

4] Coalition for DSM-5 Reform website

5] Open Letter and iPetition

Filed under American Psychiatric Association (APA), Coalition for DSM-5 Reform, Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-5 in the media, ICD revision process, ICD-11

American Psychiatric Association responds to letter from American Counseling Association

November 22, 2011 by

American Psychiatric Association responds to American Counseling Association’s letter, calling for external review of DSM-5

Post #114 Shortlink: http://wp.me/pKrrB-1qt

On November 17, the American Counseling Association, which represents 20% of all mental health professionals, published a letter to the American Psychiatric Association, calling for external review of DSM-5.  For a PDF and text copies of the ACA’s letter see this Dx Revision Watch post:

American Counseling Association releases letter: Calls for external review of DSM-5

 

Today, the American Psychiatric Association (APA) has issued a 7 page response to the ACA’s concerns.

It should be noted that the APA does not publish the names of the 300 external advisors to the DSM-5 Development process.

Open American Psychiatric Association’s response to ACA in PDF below, followed by text version

or on the APA’s DSM-5 Development site here

          APA letter to ACA 11.21.11

American Psychiatric Association
1000 Wilson Boulevard Suite 1825
Arlington, VA 22209
Telephone 703.907.7300 Fax 703.907.1085
Email apa@psych.org Internet www.psych.org

November 21, 2011

Don W. Locke, Ed.D.
President
American Counseling Association 5999 Stevenson Avenue
Alexandria, VA 22304

Dear Dr. Locke:

Thank you for outlining the American Counseling Association’s (ACA) concerns with proposed revisions for the fifth edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-5). We value the role of professional counselors in the delivery of mental health care, and we welcome the comments of mental health care providers on DSM. We share the goal of producing a DSM that is useful to all health professionals, researchers and patients so that the American Psychiatric Association (APA) can continue to play its longstanding role in advancing the understanding, diagnosis and treatment of mental disorders.

A great deal of misinformation about DSM-5 has been circulating on the internet, so APA appreciates your direct inquiry and the opportunity to dispel myths generated from these sources. We address each of your concerns below.

Empirical Evidence and Independent Review. It is useful to review the most recent draft version of DSM-5 to truly understand the breadth of evidence collection and review that has taken place during its development. This process actually began in 1999 when APA and the National Institute of Mental Health (NIMH) sponsored a conference to begin creating a research agenda for the next DSM. Additional conferences sponsored by APA, NIMH, the World Health Organization (WHO) and the World Psychiatric Association took place in 2000, all of which resulted in the 2002 publication of A Research Agenda for DSM-V. Additional groups were commissioned in 2003 to further examine infant and young child, late-life and gender issues resulting in the 2007 publication of Age and Gender Considerations in Psychiatric Diagnosis: A Research Agenda for DSM-5.

APA, WHO, NIMH, and two other NIH agencies—the National Institute on Drug Abuse (NIDA) and National Institute on Alcohol Abuse and Alcoholism (NIAAA) —held 13 conferences between 2004 and 2008, involving nearly 400 participants representing 39 countries. Over half of the participants were non-U.S. residents. The work resulted in the creation of 10 monographs and hundreds of published journal articles regarding the current state of knowledge, gaps in research, and recommendations for additional research in many fields.

After the DSM-5 Task Force was formed in 2007, and based on the work described above, APA established 13 work groups, each with 8-15 members who are leading clinicians and researchers in the field, to address various areas for review. Since then, the 160 members of the DSM-5’s 13 work groups have sought to review nearly two decades of research published since the introduction of DSM-IV. Work group members selected specific diagnoses on which to focus their individual reviews of the literature in support of or against each specific topic. APA granted work group members permission to publish all of their literature reviews and nearly all have been accepted for publication in peer-reviewed scientific journals. The 2009 guidelines you referenced were developed to ensure the standardization of presentations by all work group members as they prepared draft diagnostic criteria and rationales for Task Force review. These guidelines were subsequently adopted to facilitate reviews by the Scientific Review Committee (SRC).

ACA’s call for an “independent, third party review” of the DSM process and evidence has already been answered in the establishment of these work groups and the close coordination APA has with other national and international scientific groups. The members of the work groups are not APA employees, they are not paid by APA and are not under contract with APA. Their participation is strictly voluntary, based upon their interest in advancing the field of psychiatry and better serving patients. They are free to leave the work group if at any time they are not satisfied that the process is unbiased or believe that the results are lacking in empirical evidence. Attachment A lists the institutions from which work group members are drawn. As you can see, they represent academic and mental health institutions throughout the world. No more than two members of any one institution are represented on any one work group in order to achieve diversity of opinion. It should be noted that although many of these participants are affiliated with universities, the vast majority of them also engage in clinical practice.

The work group members include multiple types of mental health practitioners. Approximately one third of the work group members hold PhDs and 30 percent are international professionals. Ninety-seven members of the work groups are psychiatrists, 47 members are psychologists, 2 are pediatric neurologists, 3 are statisticians/epidemiologists and there is one representative each from pediatrics, social work, psychiatric nursing, speech and hearing specialists, and consumer groups. In addition, there are more than 300 outside advisors — each selected because of a specific and well-recognized expertise in a particular field. These individuals represent an independent group of volunteer medical and mental health professionals who are also leaders in their respective fields and who have every conceivable incentive to ensure that the work they produce is soundly based in science and supported by empirical evidence.

Every proposed change in DSM-5 is guided by a review of scientific literature, analyses of relevant data sets and full discussion by the work group members. In an unprecedented move, the APA has opened the DSM-5 development process to the public to further ensure that the widest range of opinion and information could be sought and all clinical and “real world” implications of the diagnostic criteria could be considered. The drafts that APA has put out for review by the public are posted to elicit comments from others in the field and from patients and family members who may be impacted by changes. APA has received through its website alone more than 10,000 comments—each of which has been considered and evaluated by the work groups.

Dimensional and Cross-Cutting Assessments. These assessments were introduced in order to diagnose psychiatric disorders in a more detailed way and to recognize the frequent co-morbidities in persons who suffer from mental illness. Level 1 crosscutting assessments are based on the model of the brief two-question screener for depression, adopted by the U.S. Task Force for Preventive Services, to assess the presence of significant symptoms in 12 different psychological domains—a total of 23 questions that permit a rapid review of mental systems. If positive symptoms are present, level 2 cross-cutting measures are modeled on the NIH-developed Patient Reported Outcome Measurement Information System (PROMIS) that has been extensively tested. Where PROMIS measures were not available, we used the most widely tested comparable measures to cover other domains such as the NIDA developed ASSIST scale.

Severity measures for individual diagnoses include well-documented and publicly available measures such as the PHQ-9 for Major Depression, PHQ-8 for somatic symptoms, the Swanson SNAP scale for Attention, the Stringaris scale from NIMH for irritability, the Altman scale for bipolar disorder, and others that were developed specifically by the DSM-5 work group experts that are built on past instruments and are being tested in the field trials.

All of these scales are being subjected in field trials to test-retest reliability assessments, patient evaluations of their utility, and clinician assessments of their feasibility and utility in identifying symptomatic areas such as substance abuse or suicidal risk, which might otherwise be overlooked. External validators will include correlates with diagnoses as well as other measures of impairment and disability. Regarding the cross-cutting disability measure, the WHO Disability Assessment Scale (WHO-DAS) is one of the most widely tested disability measures in the world—developed by NIH and WHO with over a decade of testing.

Field Trials/Validity of Diagnoses. With regard to the critique of our field trials, we were pleased to see that you referenced Dr. Helena Kraemer, who serves on the DSM-5 Task Force. Dr. Kraemer helped design the field trials and authored the referenced paper as part of the DSM-5 conference series on the integration of dimensional and categorical diagnosis. As Dr. Kraemer notes in the referenced paper, a field trial is not the forum in which validity can be fully assessed, and as in every field of medicine, diagnostic criteria reflect the best scientific understanding at the time, but they continue to develop and evolve as more scientific research comes to light.

Definition of Mental Disorder. The definition of mental disorder that is used in DSM-IV is undergoing a thorough review by the DSM-5 Task Force. There have been two revised definitions proposed: one, as you mention, by Stein et al. published in Psychological Medicine, the other proposed by the DSM-5’s Study Group on Impairment and Disability Assessment. Neither definition has been accepted by the Task Force at this time. There is no intent on the part of the Task Force to overstate the psychobiological advances in mental disorders; all other paradigms are being considered as well. Through the review process, APA assimilated input from around the world and across disciplines and is reformulating its recommendations for the definition of a mental disorder. Many other proposals have been revised after consideration of public comments as well. We continue to work towards a definition of mental disorder that is evidence-based and acceptable to the mental health community at large. We will look forward to your comments on the revised definition when it is posted in the third round of revisions expected to come out in the spring—when we plan to open another public comment period on our website.

Transparency. The APA asked those involved in the DSM-5 process to sign a member acceptance form. The form contains a confidentiality provision that has been the subject of much misunderstanding and which APA has addressed in detail in the past. This form is not intended to restrict the free discussion of ideas on the issues involved in revising DSM and developing new diagnostic criteria. In fact, DSM-5 Task Force and work group members have presented and participated in open discussions at hundreds of psychiatric and other major medical meetings around the world. Work group members have requested and received permission whenever requested to publish on the proposed changes in DSM-5 without regard to their point of view. (A list of those meetings and publications is available for review on the DSM-5 website.)

Indeed, we encourage members to have open discussions with knowledgeable colleagues just as APA has encouraged comments from those interested in mental health on its website. It is only through broad and diverse opinions that we can, as scientists and clinicians, come to a consensus on how to interpret the data that are available. Further, by widely discussing these issues, APA hopes to stimulate funding for further research into areas that are not sufficiently developed to date to be included in the main body of DSM. Thus, our publication and review process has been beneficial in defining various mental disorders and also in defining and developing interest in additional areas in the field of mental health that require further study.

The confidentiality portion of the member acceptance form is not intended to promote secrecy. Instead, APA sought confidentiality to facilitate the verbal process of deliberation. Most, if not all scientific institutions of which APA is aware, including NIH, the Institute of Medicine, WHO, and all scientific journal preparations and reviews share results of research and explanations for their conclusions, but do not fully open the deliberative process itself for comment. This is crucial in order to ensure the free-exchange of ideas. While the work groups are following this established model in our own deliberations, we also made an important decision to make our proposed revisions to the diagnostic criteria, while still in draft form, available for public review both nationally and internationally.

The Scientific Review Committee. The SRC was appointed by the Board of Trustees of APA which is charged with the ultimate approval of the final DSM-5 recommendations. The SRC’s charge is to evaluate the strength of the evidence in support of proposed revisions, based on a specific template of validators. This separate peer-review process will provide important guidance to the Board. While the ongoing feedback from the SRC to work groups on specific disorders will not be made available during the DSM-5 development process (as is the case for the deliberations of NIH study sections), summaries of the committee’s final decisions will be incorporated into DSM-5 “source books.” The SRC’s contributions will be reflected in the final criteria of DSM-5. Another committee, the Clinical and Public Health (CPH) Committee, has recently been appointed by the Board to consider clinical utility and public health issues that are not being reviewed by the SRC.

In addition, the APA has worked with the World Health Organization on an ongoing basis to develop harmonization between disorders included in both DSM-5 and ICD-II . Public comment has twice been solicited on proposed diagnostic criteria, and a third public comment period is planned for 2012. Work group members review each comment submitted through the DSM-5 website and consider revisions to criteria based on this input from other health professionals, consumer advocates, patients and families, and other members of the public.

The APA believes that the extensive process of development for DSM-5 will result in a scientifically and clinically useful new edition of the diagnostic manual, and we are indebted to the hundreds of experts who have contributed to its content. We are grateful, as well, for the valuable input from concerned individuals and organizations, and we appreciate the opportunity to respond to the concerns of the American Counseling Association.

Sincerely,
John Oldham, MD President
Attachment

Attachment A: DSM-5 Task Force and Work Group Member Affiliations

2 APA
1 Boston College
1 Brown University 1 Cardiff University
1 Case Western Reserve University
1 The Chinese University of Hong Kong
9 Columbia University
1 Dartmouth Medical School
3 Duke University
1 Emory University
1 Federal University of Rio Grande do Sul
1 Florida State University
1 Free University Medical Center, Amsterdam
1 Hamburg University 9 Harvard University
1 Heinrich Heine University
3 Johns Hopkins University
1 Karolinska Institute
4 King’s College London
1 Maastricht University
2 Mayo Clinic College of Medicine
1 McGill University 1 MDDA-RI
1 The Menninger Clinic
1 Mt Sinai School of Medicine
1 George Washington University/Howard University
1 NICHD
5 NIMH
1 NIAAA
1 NIDA
1 New York Medical College
2 New York University
1 Oregon Health Sciences University
1 Robert Wood Johnson Medical School
1 Rutgers University
4 Stanford University
1 Texas A&M University
1 Tulane University
1 Uniformed Services University
1 Universidad Autonoma Metropolitana-Xochimilco
1 University College London
1 University Hospital of Freiburg
1 University Medical Center Groningen
1 University of Alabama, Birmingham
1 University of Bordeaux 1 University of Dresden
1 University of Amsterdam
2 University of Arizona/Sunbelt Collaborative
1 University of Arkansas for Medical Sciences
2 University of British Columbia
4 University of California, Los Angeles
1 University of California, Berkeley
1 University of California, Davis
5 University of California, San Diego
1 University of Cape Town
1 University of Cincinnati
2 University of Colorado
1 University of Connecticut
1 University of Florida
2 University of Illinois at Chicago
3 University of Iowa
1 University of Laval
1 University of Manchester 1 University of Maryland
1 University of Michigan 1 University of Minnesota
1 University of Naples
2 University of New Mexico 1 University of New Orleans
3 University of New South Wales
1 University of North Carolina
2 University of North Dakota
1 University of Notre Dame
1 University of Oxford
3 University of Pennsylvania
5 University of Pittsburgh
2 University of Puerto Rico
2 University of Rochester 1 University of San Diego 1 University of South Carolina
1 University of Southampton
3 University of Toronto
2 University of Washington 1 Vanderbilt University
1 Viersprong Institute
1 Virginia Commonwealth University
4 Washington University
1 Weill Cornell Medical College
1 Wesleyan University
2 Yale School of Medicine

[Letter ends]

 

Related information:

1] DSM-5 Development website

2] American Counseling Association releases letter: Calls for external review of DSM-5

3] Coalition for DSM-5 Reform Tab page on Dx Revision Watch site

4] Coalition for DSM-5 Reform website

5] Open Letter and iPetition

Filed under American Psychiatric Association (APA), Coalition for DSM-5 Reform, Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-5 in the media, DSM-V, ICD-11, WHO (World Health Organization)

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