I Want a DSM Wiki

As most readers of this blog are well aware, the American Psychiatric Association will publish its latest version of the Diagnostic and Statistical Manual (the hallowed “DSM”) in 2013.  The next version will be version 5.  (Note, it’s “5,” not “V.”  This is so that follow-up versions can be named 5.0.1, 5.1, 5.1.1, etc.  Just like computer software.  I kid you not.)

The provisional criteria have been made public, and the APA invites anyone to comment on its website, dsm5.org.  (The full development process was not this transparent.  Allen Frances and Robert Spitzer, two dissidents, famously decried the “nondisclosure agreements” the book’s authors had to sign.  Spitzer even commented, “The intent seemed to be not to let anyone know what the hell was going on.”)

But as we get closer to the publication date, readers can have a closer look under the hood.  Anyone can surf over to their website and make comments.  Yes, now is your chance to let the leaders of the psychiatric profession know precisely what you think about the new “Somatic Symptom Disorder” diagnosis; challenge the possible removal of the “narcissistic” category; or just tell the authors that you think psychiatry is all a crock of s***.

In an interview published today on Medscape, David Kupfer, chair of APA’s DSM-5 task force, reports that this spirit of openness and flexibility will likely persist even after its publication.  He says the upcoming DSM-5 will be a “living document,” complete with an electronic version (probably online?) which will be “much easier to update and may even include links to videos and vignettes.”

That could be a big step forward.  Imagine: if you’ve never seen catatonia before, you might be able to click on the DSM-5 entry and see a video of a catatonic person.  If your patient doesn’t understand why you just diagnosed her with borderline personality, you can read her a descriptive vignette (so much more interesting than a checklist!) and she’ll get it.

My thinking is, why stop there?  Psychiatrists are already way behind the times when it comes to modern technology.  Our peers in other specialties get to use fancy doodads like MRI scanners and bypass machines and stents all day long.  We just sit around and talk to people.

And then it hit me:  the APA should create a DSM-5 wiki.

For those of you who have no idea what a “wiki” is, it’s a website developed collaboratively by users and visitors.  Any user can add content, and it’s edited in real time by other users.  Disputes are resolved by online discussion, and historical changes can be viewed by anyone.  Perhaps the most famous example of a wiki is Wikipedia, the online encyclopedia.  Those articles were not first published in a book somewhere; instead, they have been written by experts and non-experts alike, and are constantly being edited.  Wikipedia has, for better or for worse, come to replace conventional encyclopedias and is a remarkably accurate (and free) source of material.

Maybe the APA can do the same!  Let’s put the DSM-5 online and let people do whatever they want with it.

Imagine the uses.  A DSM-5 wiki would let clinicians chime in about what they think ought to be changed or added, like an interesting “subtype” of an existing disorder.  Similarly, scientists could share findings that might be relevant to diagnosis (like newly discovered biomarkers) and clinicians could share novel uses of off-label medications, therapeutic successes, and interesting case reports.

Each medication could have its own Wiki page, with complete FDA approval information and dosing.  Herbals could be included.  To be fair, pharmaceutical companies would have free access to their documents, but any changes made by industry would be flagged as such.  Users could even upload cost data to help patients find affordable generic alternatives.

But the APA needs to make an even stronger statement that we’re not just old guys sitting around smoking pipes.  We need to go balls to the wall.  We could allow users to upload videos of unique patient presentations (with the proper HIPAA safeguards in place, like black rectangles over patients’ eyes, etc), public-domain lectures by famous psychiatrists, and links to journal articles describing new and relevant findings.  We could also add references to fascinating psychiatry blogs like this one. (lol)

Patients could also upload their own experiences, in YouTube format.  Their videos would be cross-referenced to the relevant diagnoses and/or medications.  Videos with the most “hits” could win a prize.  Maybe we can link terms to their Urban Dictionary entries.

We could add clips from Hollywood movies depicting particular disease presentations.  We could add links to Amazon.com to purchase relevant books (and use the Amazon Associates revenue to help manage server costs).  We could include a Skype plug-in that would allow users to chat with other people logged on at the  same time.  We could even sell space to advertisers like Groupon (“10 sessions of psychotherapy for the price of 5 in Chicago!!”) or, for those over 21, porn sites (targeted specifically to readers of the “Paraphilias” entry).

Social media is the future, and the APA really needs to get with the program!  An animated GIF logo.  An MP3 theme playing in the background of each page.  A Flash-based interface (sorry, iPad users).  The APA could even create new, edgy slogans for itself and for the DSM.  For instance, it’s not DSM-5 anymore, it could be “D5M-ph!\/3″.  It’s not just a “living document,” it can be the most 4w3soM3 social media psychiatry destination on the planet!   OMG!!!!!!1!

Let’s do it.

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30 Responses to I Want a DSM Wiki

  1. moviedoc says:

    If you’re at all serious about a wiki, behavenet.com has the skeleton, complete with DSM-IVTR criteria, a few of those videos illustrating pathology, all the drugs, and even the Amazon links for books and movies. It’s moving to a new platform that will allow for comments, but the endeavor you suggest will require curators. Interested?

    • stevebMD says:

      The wiki idea would be far more interesting (and useful?) if it started from scratch, but I agree behavenet.com is a very strong start, and an excellent site in its own right. Let’s talk….

  2. leejcaroll says:

    This just gives more grist to the mill for those who believe psychiatry (and psychology) is not a valid discipline. Imagine if you were able, as a non medical person, to give input into the diagnostic criteria for diabetes or other diseases/disorders.
    And what a great way to say it.

    • stevebMD says:

      Maybe, maybe not. I wrote this post as a tongue-in-cheek response to Kupfer’s suggestion that DSM-5 will be a “living document.” But the more I thought about it, the more I realized that if we scrapped the current DSM criteria and built a new manual from scratch– “organically,” like Wikipedia– we might end up with a very useful tool. Different from the DSM, yes, but still capturing the essence of “mental illness.”

      Psychiatry and psychology are valid disciplines constructed on largely non-validated premises. To me, crowdsourcing would be a better way to establish validity (or, at the very least, reliability) than relying on ten conflict-laden ten men and women and their nondisclosure agreements.

  3. duanesherry says:

    Steve,

    Who knows, maybe someday people will be able to get their life-long diagnosis at the speed of sound… and their medication at a vending machine in the mall.

    I’d like to see some technology that would help people have the labels removed…They don’t wash-off too easily with soap and water from what I understand.

    Duane

    • Mr.Tod A.Parker says:

      The CCHRI is running ads that show children who were labeled with disorders removing their label, revealing the greater that is behind the label. It takes a few dollars away from big pharm, but its priceless to see a child reach their full human potential when they are told they are great and valuable instead of the stigma that is carried by a diagnosis. These kids are the future lets give them encouragement they need.They can wash it off, but it wont get clean with dirty water. Thanks for taking the time to read this.

  4. leejcaroll says:

    Already there is the issue of ‘disorders’ no longer being called disorders because of changes in society (such as homosexuality) but maybe, because some of the DSM is based more on societal values and changes than true diagnostic criteria (for say, schizophrenia which is more a group of specific behaviors, signs and symptoms than many neurotic disorders. Yes, that non disclosure clause, to me, is a little bizarre. I have wondered if something like autism, or ADH is more prevalent only because the diagnosis has widened to accommodate a lot more behaviors than before. But, for the DSM I agree maybe too many cooks, even those without culinary (as it were) experience is better than 10 folks who come with their own prejudices and possible conflict of interests.
    (very strange comment box is cooming up black as is typoing so hard to see what you are writing. Hope I fixed all my typos)

  5. Tom says:

    There is just something very strange about people who have profited from drug companies sitting in a conference room and voting on whether an illness or disorder exists. The fact that we do this in psychiatry gives ample ammunition to those who view our field as a complete joke. Can you imagine a group of endocrinologists convening and voting diabetes out of existence? Or a group of oncologists deciding that pancreatic cancer doesn’t exist any more??

  6. leejcaroll says:

    One has to wonder if the comments from the ‘public’ can be manipulated so that pharma, for instance, ends up with a bigger say. Because my advocacy is chronic pain. this reminds me of the issues with creating a disorder, such as fibromyalgia where the symptoms are invisible but pharma gets more and more involved in offering medications for it. Did the name come first or did pharma help to manipulate so that they had a disease for the meds they already have?
    Carol

    http://apainedlife.blogspot.com/

  7. Jackie says:

    I imagine that Tom Cruise is jumping on a couch somewhere at the very idea of this DSM 5 Wiki.

  8. duanesherry says:

    Steve,

    Re: Tom Cruise, et al…

    I’m surpised that the APA and NAMI have not called for a permanent committee on subversive activity…in the spirit of former U.S. Senator, Joe McCarthy (and his investigation into communism).

    I can see it in my mind….

    Subcommitte Chair:

    “Mr. Dinero, in your movie, ‘Analyze This’, you had a line where you said (more than once), “Ohh, yoo…. You’re good, yooo!”…. Where you aware of the insult this would have on psychotherapy… The fallout it might have for those seekiing psychotherapy?”

    Dinero:

    “It was a movie.”

    (laugher in the room)

    Subcommittee Chair:

    “I would like to remind you of the seriousness of this investigation…. On May 2, 2003, you were seen boarding the private jet of John Travolta… Your personal phone records indicate three separate calls last month to Kirstie Alley, both known scientologists… Can you explain?”

    Dinero:

    “Yeah, John is a close friend…. has been for years… Kirstie Alley, ,the same.. and I called to congratulate her on her ‘Dancing with the Stars’ success.”

    Subcommitte Chair:

    “Mr. Dinero, let’s get to the heart of the matter… Are you now, or have you ever been a member of the church of scientology?”

    (deadly quiet in the room)

    Dinero:

    (refusing to plead the 5th, remaining calm and confident)…

    “You talkin’ to me?”…
    “I asked you a question….”You talkin’ to me?”

    Ha!

    Duane Sherry, M.S.
    discoverandrecover.wordpress.com/freedom

  9. Jackie says:

    Re: Tom Cruise et al

    “It was a movie.”

    “(laugher in the room)”

    But it’s not a movie. It’s real life. About five years ago, state legislators in my state were literally being whisked off to the (Scientology) Celebrity Center in Los Angeles for dinner and dancing with John Travolta, in an attempt to get anti-psychiatry laws passed. And it almost worked, too.

    But for a governor’s veto, it would have been a crime for a psychiatrist to prescribe psychiatric medications here. Now, having a criminal conviction on record is no laughing matter for anyone, but for a doctor? And only psychiatrists, not neurologists, nor pediatricians, nor internists? Our own doctor was afraid he would lose his medical license if the bill was passed into law.

    So, my views are not about the other group, per se, or about Tom Cruise et al but about my right to make healthcare choices for myself and my family without interference from outside groups. And that’s why I’m not keen on the DSM Wiki — I think it would be very easily manipulated.

    • duanesherry says:

      Jackie,

      I’m for allowing parents the right to opt OUT of psychiatric diagnoses and treatment… The Ron Paul Parental Consent Act –

      http://www.petitiononline.com/rppca/petition.html

      I’m for families NOT being victims of over-aggresive tactics by Child Protective Services… as was the case with Nate Tseglin… whose family I had the opportunity to talk with by phone a few years ago… They went through quite an ordeal –

      http://articles.ocregister.com/2008-02-17/opinion/24714805_1_autistic-boy-social-workers-parents-fight

      As I mentioned in a previous comment, I worked with John Breeding, Ph.D. here in Texas a couple of years back… We provided testimony in both senate and house committees. Lobbyists were persuading legislators not to sign-on to ANY legislation… working the phones… making personal calls to legislators, that would limit the drugging of children in foster care (where an unspeakable amount of children are drugged)… along with those in Medicaid programs, where enormous fraud is taking place… law-breaking, big-time law breaking –

      http://psychrights.org/education/ModelQuiTam/ModelQuiTam.htm

      A representative for one of the bills (there were several), Sylvester of Houston…. simply wanted some reasonable oversight… to make sure the drug had been FDA-approved for children. I had the unfortunate opportunity to listen to the numbers… the statistics of children in Texas who were put on what David Cohen, Ph.D. calls the “strongest drugs on the planet”…. The stats made me literally ill… Those under three… those under five… those under seven…

      Once again, NAMI folks chimned-in, big time… for NO oversight whatsover…

      In Texas, we came up with a novel idea… The Texas Algorithm Project… There’s not a representative in this state who is not keenly aware of this boondogle, and the financial losses to our state… Other states have been successful in the CRIMINAL (not civil, but ‘criminal’) convictions of drugmakers for “off-label” prescribing of drugs to children… –

      http://www.ahrp.org/cms/index.php?searchword=fraud&option=com_search&Itemid=5

      I’m for free-markets, parental consent… but psychiatry, and its partner in crime, Pharma simply cannot be trusted in this area. They have a history of injury, and unfortunately, nobody is providing any oversight… Back-to-back FINES for Pharma… no reward for parents… CRIMINAL convictions as misdemeanors… not FELONIES.

      It is what it is…. the targeting of children… From Psychiatrist, Peter Breggin, M.D., whose vitae includes Harvard teaching fellow, consultant to the National Institute of Mental Health (NIMH). –

      http://breggin.com/index.php?option=com_content&task=view&id=38

      If these drugs worked, there might be some room for healthy debate, eg. for teenagers (those close to the age of consent, certainly not toddlers)… But as we are beginning to understand, they DON’T WORK… As explained by Timothy Scott, Ph.D. … who explains that they barely beat placebo… unless they’re pitted against active placebos (those that are marked, colored, made to look like real drugs… with a “side effect” added to the mix)…. In this case, we see placebos beat the drugs.. Another must-see –

      http://www.ihealthtube.com/aspx/viewvideo.aspx?v=15df4d287254608c

      How about something different… something NEW… for once –

      http://discoverandrecover.wordpress.com

      Duane Sherry, M.S.

      • Jackie says:

        Mr. Sherry, I know what you’re for already.

        But what you’re for does not get to determine my medical choices, just as what I’m for doesn’t get to determine yours.

      • leejcaroll says:

        “opt-out” so if a child is non functioning Mom and Dad can say forget it to medical care. That is what the Christian Scientist parents said as they watched their child die. tahttp://www.nytimes.com/1990/08/06/us/in-child-deaths-a-test-for-christian-science.html
        Duane I know your bias but there can be a middle ground where too many may be being diagnosed and given drugs vs. non medical people deciding what medical, and yes, psychiatric, care is necessary.

  10. Gary says:

    “Psychiatry and psychology are valid disciplines constructed on largely non-validated premises” equals “I’m a good guy even though I abuse my girlfriend.”

    Things are what they actually are–not what they should be, want to be, or think that they could be if not controlled by Big Pharma.

  11. Rob Lindeman says:

    To start over from scratch! What a wonderful fantasy! Hey, we can dream, can’t we?

    • Jackie says:

      Having read your comments here and on another blog for a few weeks, I can tell you’re no fan of psychiatry. Fair enough. But, as a pediatrician, what do you do when one of your adolescent patients presents with prodromal symptoms of, say, schizophrenia or bipolar? Or if you don’t like those labels — you have a young patient who suddenly withdraws from life, can’t sleep, do schoolwork or get to school at all, and doesn’t want to eat?

      • Rob Lindeman says:

        Jackie,

        If you had the advantage of being a mom in my practice, you would know. I answer all calls from distressed families and deal with them with all the professionalism and compassion I can muster.

      • Jackie says:

        I’m very perplexed by your answer as I don’t see how “all the professionalism and compassion I can muster” is providing medical care.

        But thank you for responding.

  12. duanesherry says:

    Response to leejcarol and Jackie (quickly… to make room for others).

    Jackie,

    We each come from different life experiences with all of this, and so it’s likely we will not agree… but I do understand your concern, and (believe it or not), I share it (from a different angle)

    As a fellow-parent who has been through (much) the same… My thoughts and prayers are that you find some things that help your son. And I mean that sincerely.

    leejcarol,

    The article spoke to my concern –

    … “parental autonomy on the one hand and the right of the states to protect children.”

    As strange as it may seem, I think we are (at least in some ways) making the same argument… From different ‘biases”… We all have them, Jackie.

    Duane

  13. duanesherry says:

    biases comment was meant for leejcarol (not Jackie)
    my apolgies

    duane

    • Jackie says:

      Mr. Sherry, our experiences are not similar at all but I appreciate your comments just the same.

      And yes, I’m biased too — as anyone reading my posts can see.

  14. Anonymous says:

    Steve,
    I thought your post was hysterical…love the dry humor.

  15. Audrey says:

    The idea that the DSM 5 will be a “work in progress” just shows how questionable psychiatry really is. Most psychiatrists know that the science is very subjective, and that every day they are reinventing the science. However, having practice based guidelines allow psychiatrists to adhere to some sort of evidence based medicine. Evidence that is based on scienctific data (more objective than subjective). To make a diagnostic tool that evolves based on public input is degrading the science….

  16. Iatrogenia says:

    Intriguing idea, especially the part where psychiatrists pay even a second’s attention to the subjective experiences of patients.

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