Support Site Used for Drug Marketing

Natasha Singer at the New York Times writes an interesting article on patient social networking sites like PatientsLikeMe, and the way they’re used to collect individual health data fro direct-to-consumer drug marketing.

PatientsLikeMe is a community for people with neurological diseases such as epilepsy and multiple sclerosis, where they can share their experiences with various drug treatments with othrs. People can create extensive profiles, which are useful for finding people with similar characteristics, so that you can compare notes on what works and what doesn’t. However, this same information can be analyzed by pharmaceutal companies, and PatientsLikeMe actually actively promotes this. It is not its intention that pharma companies will market to individual patients, since their goal is that companies learn from patients rather than the other way around, but of course direct-to-patient marketing does happen as a result.

Of course, one’d say, if you read the privacy policy, you’d know what happens to your information when shared on PatientsLikeMe. PatientsLikeMe, after all, is very honest about its sharing with third parties. This is one more reminder to always read privacy policies, but I know that many people don’t. That way, medical information could be distributed to third parties and used for marketing purposes without informed consent, when all the patients thought they were doing, is sharing support with other patients.

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Should Mental Health Professionals Google Their Clients?

Recently, some discussion has sprung up in the Netherlands around whether psychiatrists or psychologists should google their patients. The Dutch Association of Psychiatry (NVVP) says that information that has been put on the Internet, is public, so anyone should be able to view it, including psychiatrists. On the other hand, the Netherlands Institute for Psychologists (NIP) disapproves of the googling of patients by psychologists, because it can impact the treatment relationship negatively. It is also reasoned that the information relevan to treatment should come from the patient directly.

That is where it gets a little troubling: some patients simply do not or cannot give the information relevant to their treatment. Googling without consent is, in my opinion, not productive in this case, but information gained elsewhere, such as online, may sometimes help in this case. For one thing, the fact that my high school tutor read my online journal back in 2004 opened the doors to my eventually seeking help for my issues. I would never have been able to communicate these issues any other way.

On the other hand, does the end justify the means? Six years later, I feel that both of us overstepped our boundaries by sharing my online journal, because that way, he was dragged into emotional issues no teacher should have to help a student deal with. To be specific, he was the first who knew that I have insiders. It was not his job to deal with that, and the fact that he tried anyway, had some negative consequences. Maybe mental health professionls have a broader array of issues that is their job to help clients deal with, but still, boundaries can be overstepped here.

Currently, I give professionals consent to read my blog. I most likely wouldn’t have odne so if I’d still written as personal a journal as I did in 2004, because of the fear that we would again overstep our boundaries. Then again, the fact that the information that is on the Internet, is public, is the reason I avoid writing highly personal things on the Internet these days. In so far, I agree with the NVVP. However, I think most people are more careful, but a few are less careful than I am, and people with mental illness are especially vulnerable in this respect.

A last issue is of course the fact that the information people put online, no matter how careful or careless they are, was not intended fo rprofessionals to read, and may therefore be misinterpreted. Information may also be outdated or inaccurate, and most likely will be irrelevant to treatment. Is it ethical for a mental health professional to know about a patient’s sex life, what they ate for lunch today, or what they just spent E10,000 on, when there are no other indications for sexual issues, eating disorders, or a spending problem?

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Autistic Man Tasered for Unknown Reason

The state of Georgia is getting a bad name with me for its treatment of autistic people. Last Friday, an autistic man was tasered, taken to the ground, and charged with disorderly conduct for a reason that remains unclear. According to the police, Clifford Grevemberg was drunk when sitting on the curb waiting for his brother to order food. It is not said what Clifford did while “drunk”. His brother claims Clifford has never used alcohol, and his apparently odd behavior is due to his autism. Again, we do not know what Clifford did that apparently warranted tasering. Tasers can cause cardiac death. Of course, the police did not know that Clifford suffers from a heart condition, but the fact that tasers are not safe, should in general lead them to use them with caution. A court date for Clifford has been set for July 27. I hope the police will be disciplined for their excessive use of violence, but I think not.

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At Least Twenty Psychiatric Patients in Long-Term Seclusion

Today, Dutch news program Nova will feature the long-term seclusion of psychiatric inmates. At least twenty people have been continuously secluded for over three months within the last year. That may be an underestimate, because the statistic comes from the Centers for Consultation and Expertise (CCE), who have only recently involved themselves with mental health patients and who may not be involved in all cases. Another reason it may be an underestimate, is that seclusion may be underregistered, for example, if it is said to be voluntary. I have personally experinced the presumption of consent in seclusion, and it doesn’t surprise me if it happens rather often.

Still another reason why the occurrence of seclusion may be underestimated, is even more worrisome: people are secluded in their own rooms. This way, mental health agencies can avoid having to deal with the reporting to the Inspection that is required for (involuntary) seclusion, because there is no legal framework around seclusion in one’s own room. In fact, until now, I understood this was illegal, but Tom Kuipers, director of GGz Nijmegen (Mental Health Nijmegen, my mental health agency), seems to consider it a serious alternative.

Of course, we hear all the standard excuses, about long-term seclusion being the only option or the most humane alternative. Reminds me of that psychiatrist back in 2009 who said that you can’t sit on patients, can you?

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Fashion Designer: Let’s Blame Women for Anorexia

In an effort to combat the idea that the modeling industry causes anorexia, fashion designer Alber Elbaz has decided to turn the tables of the blame game: women are to blame for anorexia.

“We are being accused that some models are anorexic,”’said Alber, “But we as fashion designers cannot be blamed, because you know, when I talk to women
around the world, rich and poor and young and old and intellectual and not, what they want to be is skinny. You ask them, what is your dream? It’s to be
skinny. That’s all they want.”

Firstly, that makes me wonder to what segment of the female population aroudn the world Elbaz talks, and what the influence is of him being a fashion designer on these women’s responses. Because, you know, women indeed tend to be appearance-conscious, but to say that it would be their spontaneous first rsponse to the question what their dream is, would be a long way off.

Secondly, beauty ideals are not created by each individual woman independently. They originate in a cultural and social framework. This is not to say the fashion industry is the only entity that creates these ideals, but that ideals originate from interactions between women and between women and other entities, such as the media. Just because Elbaz likes imperfection, doesn’t mean that’s the image most of the media portray.

Lastly, anorexia is something different from being just skinny. It’s a serious mental illness. While possibly most women may want to be thin, only about 0.5-1% of women develop anorexia in the western world. Anorexia is caused by a multutude of biological, psychological, social and cultural factors. The influence of the media and the fashion industry is one such cultural factor, but of course it is not solely to blame for the development of eating disorders.

But it is inappropriate and offensive to blame women for their own illness. Even though psychological factoors within the woman contribute to the development of anorexia, it is simply not true that women choose to perceive themselves as fat even though they’re skinny. Again, anorexia is a serious mental ilness that requires treatment, not blame.

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Of Bodies and Burdens: Abortion vs. Child Euthanasia

Sometimes, it would’ve been easier if I were still radically pro-life, so that I could tell anyone supporting abortion or euthanasia that people have no right to take the life of anotheer person, no matter how dependent that person is on someone else. Yet I recognize a person’s right to bodily autonomy, too, and for this reason, should be pro-choice: no matter how many alternatives to parenting exist, there is no alternative to gestation other than to terminate. Therefore, if pregnancy threatens a woman’s health or wellbeing – even if that threat is motivated by factors related to the unborn child she carries, such as if that child has disabilities -, the only option to relieve that threat or discomfort is to terminate the pregnancy. If you believe in a person’s right to do with their own body as they please, therefore, you must automatically be pro-choice on abortion.

But what if you do not want a child, and that child is born? If not wanting a particular child is a valid reason to abort when the child is still in your womb, isn’t it a valid reason to terminate the child once it is born? In my opinion, no, because, unlike gestation, parenting by a specific person is not a necessity to keep the child alive. A parent can choose to give a born child up for adoption, or, if the child has disabilities, can choose to put them in a care home. Of course, care homes may provide less-than-optimal services to children, and adoption might affect the child’s mental health, but the solution is to improve care and adoptive services.

It is interesting, of course, that infant or child euthanasia is only legal on children with disabilities, whereas abortion is legal on any fetus up till viability. If being a burden on one’s parents were a legitimate reason to kill, and if it didn’t matter whether a child is still in the mother’s body or not, and if alternatives such as adoption aren’t relevant, either, then euthanasia should be legal on any infant. Also, if the fact that the infant cannot make their wishes known and therefore has the parent make these decisions for them, that should go for any infant, too. No baby can tell their parents that they want or don’t want to die, and any baby could grow up to be a pain in the arse of the parents.

So why is it all about disabled children? It’s probably that it is abled people making these decisions. They think that living in a marginalized body somehow makes you less of a valuable human being. Not only do they allow euthanasia of consenting adults only if the adult is disabled enough by someone else’s standards to be worse than death – despite the fact that people with the same disabilities might live happy lives -, and not on non-disabled people who “suffer life”, thereby stripping adults of the right to decide what to do with their own lives. On top of that, it is only abled people who can decide that a certain body type makes you worse than death, even regardless of your own opinion if you’re a child, regardless of whether other children with the same disabilities live happy lives. In fact, infant euthanasia with parental consent goes farther: if a parent is unhappy, that is a reason to kill the child, regardless of whether other parents may be happy to parent a disabled child, or this specific disabled child.

In short, abortion is legal on any infant up to viability, because this is the only way to relieve the pregnatn person of the discomfort or threat of gestating. On the other hand, once born, if your parents view you as a pain in the arse, but only if you also live in a marginalized body, you can be killed with these parents’ consent if they feel unhappy about parenting you, regardless of how easy it is to get rid of you without killing you. And even if abortion is not merely about bodily autonomy, am I still the only one who perceives a double standard here?

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Should Sensory Processing Disorder Be in DSM-V?

On the list of disorders the American Psychiatric Association considers adding to DSM-V but hasn’t yet made a formal proposal on, is sensory porcessing disorder. SPD, also known as sensory integration dysfunction, is a syndrome populated by Anna Jean Ayres but not formally recognized in either the current DSM or ICD. It is characterized by difficulties in organizing the stimuli that enter the senses. Symptoms include hypersensitivities, hyposensitivities and poor discrimination of sensory stimuli.

I have been unable to find out why SPD was suggested as a DSM diagnosis. A possible reason may be that it has to be included somwhere in order to get children (you hardly hear of adults with SPD) the services they need. Then again, I fail to see why it should be in a psychiatric handbook.

There are several reasons why this may not need to be in a psychiatric handbook. Firstly, it is possible that SPD is not a distinct disorder at all, but rather a symptom of something else, such as autism or traumatic brain injury. Sensory processing deficits are theorized as an underlying cause of autism, and, if sensory processing can be isolated as a neuropsychological skill, it is plausible to assess it in TBI. But that doesn’t make SPD a distinct disorder. Particularly the fact that it is hard to differentiate from disorders of which it might be a symptom, is a reason against inclusion of SPD as a separate syndrome.

Even if it were a distinct disorder, I argue that it shouldn’t be in a psychiatric handbook. Psychiatry is not or hardly concerned with neuropsychological or occupational therapeutic functioning – and insofar as it is concerned, it seeks to dictate these fields -, which is what is being affected by SPD. In order to make this into a legitimate psychiatric disorder, its symptoms ought to be translated into observable behavior problems, and there we run into the problem of huge overlap with other psychiatric disorders. Aggression, for example, might be a reaction to sensory overload, but it might as well be a symptom of a mood regulation disorder or oppositional defiant disorder. How will these be distinguished without relying on non-psychiatric assessment tools?

Therefore, if SPD is to be classified as a disorder at all, I think it ought to be a neurological or neuropsychological disorder. That is, if sensory processing can actually be measured relatively reliably with tests. If it is just a term coined by some occupational therapist who wanted to invent a disorder, with no validity in the external world, then SPD should not be classified at all.

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Blog Recommendation: Mutual Madness

I just came across an interesting, new blog for people with mental illness as well as mental health professionals. It’s called Mutual Madness. The aim of this blog is to answer common questions people may have about mental health, from a patient’s point of view. People can submit questions and have them answered by a knowledgeable and diverse group of people with mental health conditions. Judging from the recent topics, it seems answers can be both to queries for factual information, and requests for advice, although of course the bloggers are not doctors. The blog was promoted on a psychiatric nursing blog, and it is my hope that professionals will eventually use this venue for some insight from the patient’s perspective.

ETA: Inthemargins invited me to join the collective of contributors, so this has essnetially turned into shameless self-promotion. I haven’t yet posted anything over there, and, if I do, it is my hope that it will be of any use.

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Calling for Individualized Care for the Most Severely Disabled

Harold L. Doherty of Facing Autism in New Brunswick raises an important question: What do we do with severely disabled people when the institutions close? Harold advocates the reforming of the institutional system, so that those with the most severe disabilities can get quality residential care. He claims this opinion is based on a realistic approach to the care needs of the most severely disabled, and I have to agree in part, in that often the wrong motives are used to deinstitutionalize those with severe intellectual and developmental disabilities, namely, cost-effectivness and the presumption that these people are truly more independent than we think they are. Now what if they aren’t?

I have always advocated individualized care programming, and I continue to do so. This means that some people will find a sheltered environment more appropriate. Others may prefer a community-based setting with as much or as little care as they need. They key here is individualization. Most institutions, even modern ones, don’t employ that concept, and often do not really provide the sophisticated care some patients need. In fact, neglect happens at almost every long-term care facility I’m aware of. That should change. Residential settings for those who want them as well as appropriate community services should be built, but most of all, the care in these facilities should be catered towards the residents’ needs. That may not be cost-effective. So be it. Humane care is not a luxury.

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Parent Murders Autistic Child, Yet Again

Yet another autistic was murdered by his own mother. I can’t wait for the sympathetic reactions, to the mother of course, from all over the autism community. That was sarcasm. My sympathies go out to Glen Freaney’s other family, friends, and everyone else who loved Glen enough to want to keep him alive, and I hope more than that. Sadly, Ms. Freaney chose to take that life away. I will not go into the hardship of parenting an autistic child here. That is no excuse for homicide. Period. If Ms. Freaney is indeed convicted, I hope she will get the sentence she deserves.

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