Selling your illness

A few months ago when I was doing some research about online medical  forums, I discovered PatientsLikeMe. At first I wasn’t sure what I was seeing.  I took at look at the About Us section, where I noticed that the site had a marketing team that seemed disproportionate to the rest of the staff.  Hmm.

It took a little more digging at the time (it’s more straightforward now) to see that this is a website for patients to share very detailed medical information with each other, building community and sharing sympathy.  Knowing how important this sort of interaction can be, I was intrigued.  However, there is a twist.  The site publishes an Openness Philosophy, which states in part:

You see, we believe sharing your healthcare experiences and outcomes is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. New treatments become possible. Most importantly, change becomes possible. At PatientsLikeMe, we are passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken healthcare system.

Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. As a result, research is slowed, and the development of breakthrough treatments takes decades. Patients also can’t get the information they need to make important treatment decisions. But it doesn’t have to be that way. When you and thousands like you share your data, you open up the healthcare system. You learn what’s working for others. You improve your dialogue with your doctors. Best of all, you help bring better treatments to market in record time.

PatientsLikeMe enables you to effect a sea change in the healthcare system. We believe that the Internet can democratize patient data and accelerate research like never before. Furthermore, we believe data belongs to you the patient to share with other patients, caregivers, physicians, researchers, pharmaceutical and medical device companies, and anyone else that can help make patients’ lives better.

So, the site openly states that the users medical data will be shared with “pharmaceutical and medical device companies”.  The only outcomes they declare are beneficial.  Really?

As a cynical person, when I was sharing updates about my illness with others online a few years ago, I assumed that people from those companies might be lurking and mining the data.  One way of looking at PatientsLikeMe might be to say that, “at least it’s out in the open and they’re honest about it, and people aren’t forced to share.”  That was the reaction of a couple of participants when I posed this question at a medical anthropology session at the AAA meeting last November.

I lean toward another interpretation that came up in the discussion.  If there is a value in this data and it is being amalgamated and commodified by this company, shouldn’t the patients profit from the sale of their illnesses?   Who should own that data?  The Openness Philosophy states that patients do, but is that how it is treated?

I find this site to be troubling. Though the potential exists for users to invent illnesses and symptoms and break the system (see my earlier post on Munchausen by Internet or consider pranksters and hackers), I think it’s more likely people for to get lulled into a false sense of comfort.  Searching the site now, you can find out some shockingly personal information about users there, including personal photos and intimate medical details.  I’m not sure that this is the patient empowerment that is lauded in the site’s PR.  This is a personal opinion, though, and there is much room for debate.

Munchausen by Internet

While following a trail of links from an article about Manti Te’o’s imaginary girlfriend, I rediscovered this excellent article from The Stranger (a weekly newspaper in Seattle) about people — mostly women — who lie about illnesses online. It’s a terribly interesting read.

“Munchausen by Internet” is not considered a unique illness, though that was debated for the DSM-V, but is a form of Munchausen Syndrome in which a person fakes his/her own illnesses.  (There is also Munchausen by proxy, the most common example of which is a mother who exploits exaggerated or imaginary illnesses in her child.)

It’s easy to say that these illness fabricators are pathetic or predatory, emotional vampires who feed on the sympathy of others.  However, I find myself thinking about Ong’s work with Malaysian factory workers, Nichter’s “Idioms of Distress”, or accounts of spirit possessions (mostly of women) in various cultures.  Should we consider this an individual psychiatric disorder when the condition centers around relationships with others?  Why is it largely a female phenomenon?  Is this a culture bound syndrome?

Beyond the placebo effect

We just discussed the placebo and nocebo effects in class last week, just about the time that this article appeared on Wired: Forget the Placebo Effect, It’s the ‘Caring Effect’ That Matters.  The author, Nathanael Johnson, writes briefly about a study in which the same placebo was administered to test groups in either an empathetic or brusque manner, and only the first case had noticeable results.  Johnson turns this into a case for incorporating caring into the medical process as a way to reduce overtreatment and keep patients from needing to seek alternative treatment to cure their illness, even if “science” cured their disease.

Clearly Johnson isn’t writing from an anthropological perspective and I have a couple of immediate reactions.  I’m certainly in favor of compassionate care.  What I would hate to see is a schedule of mandated ‘caring’ that results in a “you got everything on the checklist so you must be better” approach.

Lavender Town Syndrome

When I was in elementary school Pokemon came over to America. Everyone had a game boy pocket, and a copy of the game. It was everything a kid could want. Cute, tough, creepy, crazy, or cool looking monsters we owned. It was a lighthearted adventure with hours of grinding to keep young kids occupied. It wasn’t until recently, and by pure chance, that I started to listen to the Lavender Town background music. Lavender Town was a very small town in the game, and the only town with a graveyard in it. I noticed comments on a different video that brought up how the music to Lavender Town was changed when it came over seas. This isn’t a huge deal, and it happens all the time in the gaming world.

The more I looked into it, the more rumors kept popping up about the original games being quietly recalled in Japan. They in the original music for Lavender Town had certain high pitched frequencies that full developed ears couldn’t detect, but you children between 6-14 could. A few weeks after launch, there were many cases of kids having extreme headaches, and about 200 suicides. The suicides were either hanging, or a fall from a building. The only connections were they were all kids in the age range, they played Pokemon, and they used headphones when playing. This was conducted by “officials”, but they never really say what qualifies them to make sound judgement. Over time stories popped up in America. Story 1 and story 2 are for your reading pleasure. Whether you believe in the rumors or not, these are still some creepy stories. On that note, I won’t pretend I understand how the brain works. I won’t pretend to know how certain stimulus can effect our brain. I know that those high frequencies that only kids can hear are a pain. In high school there were these sound emitters that created a noise something like a cricket. None of the teachers could hear, but it would piss off a lot of kids in class. Here is an article presenting the other side. I am ambivalent here. Part of me would love to hear that it was true, but another part say, “In all likely hood it is not”.

Review of The World Until Yesterday

Worth a look:  In The Guardian, this critical but informative review of the new book The World Until Yesterday by Jared Diamond (Guns, Germs and Steel), written by Wade Davis (The Serpent and the Rainbow).  Davis presents an overview of anthropological thought as he looks at the successes and faults of Diamond’s work.  Spoiler alert: he writes, “A book of great promise reads as a compendium of the obvious, ethnology by anecdote.”

Tattoos in American Culture

As far back as I can remember, I have always romanticized tattoos. The idea of permanently etching a symbols I held dear was great. Even if my views did change, the tattoos would stand as a reminder of who I was. Anyone who has tattoos, and grew up in a more conservative city knows that tattoos are not viewed in a positive light.  The article here talks about tattoos introduction into America, and how far they have progressed in the past few years. This next one here is Sofya Gladysheva’s personal opinion, but I am 100% behind her. After a brief reintroduction of tattoos origins in America, she goes on to talk about tattoos significance to the individual.

The last article is about Vladimir Franz. Vladimir is a drama professor running for the presidency in the Czech Republic. 90% of his body is inked, and is currently in 3rd place. This article was very refreshing to me, and I hope Vladimir’s campaign helps push for a wider acceptance of tattoos.

Learning from the patient

Ilana Panich-Linsman for The New York Times

Ilana Panich-Linsman for The New York Times

The New York Times shares the touching story of a retired nurse with terminal pancreatic cancer who made the nursing program at her alma mater an offer they couldn’t refuse: to use the final days of her life to educate their students.  The school embraced this as an opportunity to teach beyond textbooks, mannequins and short hospital rotations.  Ms. Keochareon said she wanted them to have a chance to see the situation from the patient’s point of view.

I think she gave them a wonderful gift, but I was troubled that talking to a patient about her reality was considered so extraordinary.  When I attended a nursing conference last fall, the idea of learning from the patient experience was much discussed and my explanation of medical anthropology was greeted with comments like, “That’s the sort of perspective we need!”  Perhaps the tide will start to turn.

CFP for a great conference in Germany

Check out this great-looking conference in Mainz, starring medical anthropology superstars Joao Biehl, Thamar Klein and Hansjoerg Dilger.  It’s a good indication of the field’s continued struggles to define itself, and to articulate its relationship to political engagement and activism.

Subject: CFP Situating medical anthropology: between the “ivory tower of science,” activist engagement, and ethical responsibility

*GAA Biannual Conference 2013*

*Locations: anthropology in the academy, the workplace, and the public sphere*

*2. – 5. October at Mainz University, Germany*

*Keynote: João Biehl (unconfirmed)*

Workshop conveners: Thamar Klein and Hansjoerg Dilger (Work Group Medical Anthropology)

The situated knowledge of “science” has in the last 30 years taken center stage in anthropology, with ethnographic and anthropological ways of knowing and doing research having been described as being inseparably linked to sociopolitical forces and practices. This idea went hand in hand with the development of “perspectival science” – the awareness that there is no “view from nowhere” – but that research is conditioned by the particular “cultural baggage” of the re-searcher and his/her subjectivity.

That knowledge and social life forms are inter-dependent is also a well-established fact in critical medical anthropology, which has long been concerned with the production of knowledge in settings infused by power and authority. Furthermore, as medical anthropology deals with existential questions of suffering, health and the human body, the field has a strong tradition of applied approaches and activism. Yet, despite these insights the opposition of academia toward activist-scholars persists and those anthropologists en-gaged in applied practice are often disregarded.

We welcome proposals for papers that address aspects of the relationship of activism, attempts to do “situated research,” and academic medical anthropology, including questions about the researcher’s subjectivity and the moral and ethical challenges that medical anthropologists face in positioning themselves within and beyond the field. Furthermore, we are interested in what the ethical and applied responsibilities of medical anthropologists are in shifting landscapes of health and suffering that have become increasingly marked by dynamics of exclusion/social stratification – as well as by new opportunities for the funding of “societally meaningful” research.

Abstracts should be submitted both as a long version (200 words max.) and a short version (30 words max.). These should be e-mailed (including short biographical information) directly to the workshop conveners.

*Deadline:**15. February 2013*

klein@dr-thamar-klein.com <mailto:klein@dr-thamar-klein.com>

hansjoerg.dilger@berlin.de <mailto:hansjoerg.dilger@berlin.de>

Our American Lives: Nasty, Brutish, Short

Sorry to be a downer, but the evidence is not good.  A study requested by the US government, jointly conducted by the National Research Council and the Institute of Medicine, finds that Americans continue to live less healthy and shorter lives than pretty much anyone else in the developed world, and that long-standing trend (since the 80s) is only getting more pronounced.  You can follow the doom and gloom in detail here. And here. And here. Yikes.  The whole report that came out of the study is available for download here.

For those who have been following trends in American health, this is discouraging but not surprising.  What is new (to me) is the fact that our relatively poor health is not (just) the result of very bad health care for our poorer populations; the recent reports also show that wealthy Americans are likely to be less healthy than their wealthy counterparts in other developed nations.  And all of this is in spite of the fact that America spends twice as much on health care as do other developed nations.

The study suggests that many of the disparities are correctable, particularly through prevention campaigns aimed at improving health in early childhood.