The Mental Health Registry Is Coming


They say it will be like the Cancer Registry: a tool for data gathering, to assist in developing and evaluating and improving treatment strategies and outcomes.

All well and good, but mental health/mental illness information is a little bit different than cancer information.  A little bit more sensitive.

Let’s take one example that’s close to my heart.

Every year when I renew my physician’s license to practice, I must answer a question regarding my mental fitness to practice.

Now we all know that I am disabled, so of course I don’t formally practice medicine.  I keep my license in case I am called upon in an emergency, like Dr. Watson, Sherlock Holmes’s esteemed companion.  

I have never had a single complaint, lawsuit, or bad outcome.  I am very careful to keep up my continuing education.

And yet, the one time I openly disclosed my psychiatric diagnoses when applying for a license in a new state, I was immediately bundled off to the “Physicians Health Program,” where I was forced to be drug tested weekly and attend a three month sham “behavioral health” program, aka “drug rehab,” even though I have never had any substance abuse issues and was not at the time using any drugs at all.  Then I was put on “probation” for a year, even though I hold unrestricted licenses in good standing in four other states.

After putting up with this garbage for several months I withdrew, chalking this one up to a very expensive experiment.  I paid the Honesty Tax.  How degrading!

I will be very much heartened if I find that this registry is exactly what it purports to be: an instrument to better coordinate the search for better treatments.

But I doubt it.  How could a centralized registry of psychiatric patients go untapped?

Let’s say I want to take a break from retirement and teach high school biology.  They do a background check (I hope), and as of now, they don’t find anything, because I have no criminal record.

But if there is such a thing as this “Mental Health Registry,” who’s to say that in five years Homeland Security doesn’t find itself good reason to insist on the identities of the patients listed–oh, it says the data is anonymous, doesn’t it?  But it also says that the registry will be a good source of patients for clinical trials.

Yes indeed, the Cancer Registry is a good place to find patients with specific cell types of specific cancers, to recruit for clinical trials of regimens for that specific cancer type.

Well and good!  But mental illness is a bit more tricky.

Once we have names and diagnoses, we have information that can be subpoenaed.  Patient information does require a subpoena.

But under the Patriot Act, will that rule of law stand?  Or will the Registry database be…leaked, perhaps?  Or simply mined by Big Brother?

Call me paranoid, but I am not at all comfortable with any computer mainframe having my psychiatric details.  Even the Pentagon gets regularly hacked by high schoolers.  

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25 Comments

  1. People complained about a Muslim registry, but no one complained about the PDMPs, which are basically a registry for every person prescribed a painkiller (and more). Even pain patients didn’t complain. I guess they thought it was a way to be on record as a legitimate pain patient, not realizing that it can also label you as a drug addict.

    I’d guess a lot of harm will come from insurance companies and Big Pharma buying all that patient information. Insurance companies will use it to further discriminate against mental health conditions, and Big Pharma will make the numbers fit its agenda. I suppose the government will also use these databases to spy on people. I dunno… maybe privacy is dead.

    Reply
    • I believe you’re right. I didn’t know there was already a pain patient registry.

      I was chatting with a fellow who retired from the State Department some years ago. I mean he retired some years ago. He had some interesting assignments overseas. No details, of course. He mentioned a lot of peripheral things that I knew as a result of having been in those places, and also as a result of having been the wife of a spy. So I gathered that he is either who he says he is, or has studied the situation closely enough to know the inside view.

      Anyway. His perspective on privacy, especially in electronic communications of every kind, is that there is none. At all. Which is what I gathered from my personal experiences in the “black” world. One simply has to assume that one’s life is an open book to those who have an interest in reading.

      On the other hand, it takes a lot of time and energy to spy on an individual. Not worth the resources unless there’s an urgent need, like perhaps someone wants to run for office…registries take all the muss and fuss out of that, though! Real labor-saving devices. A few clicks and there you have it.

      Reply
  2. I think you are right to be dubious. I know it comes across as cynical but from what you have outlined -this kind of goveremnt data collectng registers seem to be a good thing and in time always diserve the very people it is meant to empower.

    Reply
  3. I tend to agree, that any privacy we think we have is an illusion. Lists like that are power, and power is irresistible to exactly the people you don’t want to have it.

    Reply
  4. I’m sorry, Laura. It sounds like a form of scapegoating. Honesty does not pay. Now you’re on the list. Mental illness is receiving less and less understanding in our society. We’ve gone backward not forward. It’s not going to get better in my lifetime but there is always hope. If you are ever in town, I’d love to see you. Anne

    Please visit my blog at *hannahpowers.net *

    On Sat, Dec 3, 2016 at 10:12 PM, Bipolar For Life wrote:

    > Laura P. Schulman, MD, MA posted: ” They say it will be like the Cancer > Registry: a tool for data gathering, to assist in developing and evaluating > and improving treatment strategies and outcomes. All well and good, but > mental health/mental illness information is a little bit different th” >

    Reply
    • Hi Anne! Fortunately or unfortunately, I’m without a doctor at the moment, so perhaps I’m not on THAT registry….yet. Probably on other “watch lists” though, as I am an American-Israeli dual citizen and proud of it!

      Reply
  5. Back in the day (1992) my company paid for my health insurance. After having ‘stomach spasms’ and going to the Dr., I was prescribed my first anxiety drug, however I was not told it was an anxiety drug (my Dr. sucked @ the time) I was told it was for my stomach.
    A few days after the appt, the owners of the company had a meeting with me about if I was able to do my job… ya know… being on a drug like that and asked what they could do to help. I was mortified! How did the find out!? I guess the records came with the bills (?).
    After that, I found another Dr. & paid cash for anything ‘mental health’ related.
    Yes, I get a cancer or a transplant list. But a mental health list? Oh hell no!
    The gov just passed ‘mass surveillance’ and could be following us right now ๐Ÿ˜‰
    Yes, they are clearly not following Midwesternplants… I don’t have enough hits ๐Ÿ˜‰๐Ÿ˜‰
    Just like you said, there aren’t enough bodies to follow everyone and they really only want terrorists… for the moment. I do have a piece of tape over the camera in my laptop! ๐Ÿ˜ˆ

    Reply
    • Holy shit, that was illegal even in ’92! How humiliating. Grrrrrrr!!!

      When I was working, I too paid for my mental health care out-of-pocket, in cash. Paper prescriptions, refills post-dated. In those days it was possible to do that. Now? Nope.

      I’ve always wondered whether those cameras can be hacked to photograph the user. Let’s say the DEA wants to surveil users of its own website, to pick something plausible. Can that be done?

      Reply
  6. Mental illness I’m afraid will never have the stigma removed and that is terribly sad.

    Reply
  7. A registry like this just adds to the stigma. Like a stain that marks your life wherever you go. Disgusting! Mental illness is already has its own limitations. Adding a registry just adds further limits

    Reply
    • Yes! The paranoid side of me sees this as an opportunity for Big Brother to pigeon hole us, round us up, section us all….yikes, you see how the flames of my paranoia can be fanned! Any attempt at sequestering me, marking me, marginalizing me further than I already am (if possible), sends me into survivalist standoff mode.

      Reply
  8. I would love to chat more if you could email me at michellest@mac.com

    Reply
  9. Laura, You haven’t posted in a long time. Hope all is well?

    Reply
    • Hi Larry! Thanks for thinking of me. Truth be known, I am immersed in day-to-day living in such a way that by the time I feel like writing, it’s tomorrow. Something like that. Or lassitude, or perhaps ennui….I’ve been wanting to write a post about neuresthenia, but I haven’t got the energy.

      How are you? Tell me how you are.

      ื—ื’ ืื•ืจื™ื ืฉืžื—!!!

      Reply
  1. The Mental Health Registry Is Coming โ€” Bipolar For Life | Educational Development

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