Registration open for Transform 2013

Each year, the Mayo Clinic Center for Innovation holds a stimulating, innovative multidisciplinary conference focused on how to transform the experience and delivery of health care.  Last year I attended the sessions at Mayo Clinic’s location in Second Life and wrote about it here. I’ve watched some of the presentations repeatedly and they always provide new ideas for my brain to chew.

Registration is now open for the 2013 Transform conference, which will be held September 8-10 in Rochester, Minnesota.  There is a $200 per person registration discount until the end of May. It’s not something I can afford to attend in person, but if you can I’ll be jealous! I’m hoping that it will be streamed in Second Life again.

In the meantime, you can access archived video from the past four years of the conference.

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Meeting the needs of child trafficking survivors

When a child has endured sexual trafficking, his or her problems can endure for a lifetime. Seeing this as a public health issue, the Johns Hopkins Bloomberg School of Public Health, the Advisory Council on Child Trafficking, and Goldman Sachs 10,000 Women organized the “Symposium on Meeting the Needs of Child Trafficking Survivors” earlier in May.

Seventeen videos of presentations from the symposium are available online. I’m grateful whenever an organization shares material like this so that more of us can learn from it. The few videos I’ve watched so far are interesting and thought-provoking.

Michael J. Fox as a public figure with Parkinson’s… a fictional one

I don’t watch many sitcoms, but the upcoming Michael J. Fox Show will have a spot on my DVR.  You’ve already seen the trailer above, haven’t you? It’s sweet, irreverent, and funny.  The dinner table moment that starts at 3:10 in the video just slays me.

Outside of interviews and cameos, we rarely get to see disabled people on television. I have to believe that a beloved actor with Parkinson’s disease will ensure that the details about his condition are portrayed with reasonable accuracy. It’s refreshing to see a representation of someone living with a degenerative disease; not coping, not surviving, but living.

MSF Scientific Day live this Friday

Médecins Sans Frontières/Doctors Without Borders (MSF) will stream their Scientific Day conference live at no charge this Friday [watch here].  The conference takes place in London but they have also published a schedule in Eastern Standard Time.

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Highlights of this year’s conference include:

  • The keynote speech by international health expert, co-founder of theGapminder Foundation and TED talks alumnus Hans Rosling on the synergy and conflict between research and advocacy. This will be followed by a panel discussion on the impact of MSF’s research.
  • Treatment in conflict and emergency settings including TB in Somalia and hepatitis E in South Sudan
  • New approaches to preventing malaria in Mali and Chad, cholera vaccination in an outbreak in Guinea, and preventing malnutrition in Niger by cash transfer and food supplementation
  • Challenges for MSF including the introduction of a medical error reporting system and parenteral artesunate for severe malaria
  • The role of social media and health looking at the effect of MDR-TB patients blogging about their experiences

Viewers can use the Twitter #MSFSci hashtag to participate during the event on Friday and follow @MSF_UK for more info. The video archive from last year’s event can be found here on Vimeo

Afflictions documentary clip

For those interested in mental illness or culture-bound syndromes, check out this French three-part documentary shot in Indonesia.

“AFFLICTIONS is a three part series, shot over the course of 12 years in Bali and Java, Indonesia, exploring the relationship between culture, mental illness and personal experience.”

http://www.cine.org/film/afflictions-culture-and-mental-illness-in-indonesia/

The early days of autism

Temple Grandin has a new book out this year —The Autistic Brain: Thinking Across the Spectrum — and Slate has an excerpt: The Autistic Brain: The origins of the diagnosis of autism — and the parental guilt-tripping that went along with it. It’s only a couple pages, but it’s an insightful look at how the culture and level of knowledge at the time can lead to radically different diagnoses and treatment approaches.

Not familiar with Grandin?  Here’s the first part of a mid-2000s BBC documentary about her, which was how I was first introduced to this fascinating woman:


You can watch her 2010 TED talk, “The world needs all kinds of minds” (which is also the name of a 2012 documentary about her that is available online). And if that isn’t enough, there are clips online from the HBO biopic Temple Grandin, starring Claire Danes, which won seven Emmys.

Mash Season 9 Episode 16: The Red/White Blues

http://gorillavid.in/blidnlmigqg8

Alternate, in case that link has issues: http://www.1channel.ch/external.php?title=MASH&url=aHR0cDovL2dvcmlsbGF2aWQuY29tL2NuYS9kY3B1eHhyc2k4OXQ=&domain=Z29yaWxsYXZpZC5jb20=&loggedin=0

(Both are gorilla but 2 separate uploads)

Start at 7:11 to play; if you have time, watch until the end as a health note finishes the episode. (Each episode is only about 23-25 minutes long) In this episode Springtime has come in Korea which means malaria. Unfortunately not everyone can take the medicine…for reasons you’ll have to see.

Still slightly confused about the outcome of the video? A medication that reacts poorly to people and communities of African and Mediterranean decent? Primaquine was created in 1946, it was tested during WWII on volunteers, soldiers, and prisoners of war. It was seen early on that those who were African-American had a hemolytic reaction to the medication, (though it was also noted there there were a few cases of Caucasion reactions also). After that doctors were given the warning not to use Primaquine or only in sparing amounts in those of African decent. It became a ‘race warning’, later by the time of the Korean war those who had Mediterranean background were included and recently those in the Middle East (Iraq and Iran) have been added to the list…. But is it a race issue? In fact it is not, what the Primaquine is reacting to is an allele called Glucose-6-Phosphate Dehydrogenase. Those with the allele have a hemolytic reaction when they use Primaquine. To make it very clear…. EVERYONE has the ability to have this allele. So why does it appear to create a race affect visually in those that have a shared community background for lineage or decent? Those who read my previous post may know where this is going…. that’s right! Cross-Protection! James V. Neel explains it in his article Are Genetic Factors Involved in Racial and Ethnic Differences in Late-Life Health?

‘The sickling alleles and the G-6-PD deficiency alleles are representatives of balanced polymorphisms. Homozygosity for the hemoglobin S allele is usually inconsistent with reproduction because the homozygotes usually die in childhood. Homozygosity for a G-6-PD deficiency allele (or hemizygosity in the case of a male) by no means confers the handicap of sickle cell anemia but must still be regarded as impairing the fitness of the homozygote. But in both cases, the alleles have a positive side, conferring resistance to malaria, and the frequency of the allele in a population is determined by a balance between positive and negative selective forces.’

Translation? Environment, environment, environment! This allele provides a protection against Malaria. So those in a community that have the allele and Malaria in their environment will see an upsurge of the allele in procreated generations because those without the allele may not to survive as well without the added protection. Non-alleles will be less likely to procreate a new generation when dead from the extra benefit of protection.  When more members of a community, line of decent, or group heritage have an allele it can make it appear that their ‘race’ may be more or less susceptible then others to things, when in fact this is a result of environment messing with allele spikes. Nor does it matter that the allele itself may be what causes a separate disease or condition. Its protection might be an unintentional side effect of the primary disease or condition or a protection mechanism against other diseases wiping out the primary disease or condition. So the appearance that Primaquine is not advised in certain ‘races’ is deceptive. The health label has since been changed to read that it is not advised in those with the Glucose-6-Phosphate Dehydrogenase allele else wise hemolytic shock may occur or those with similar conditions. For a long time though it was treated as a race issue from the naked eye when in truth the culprit was microscopic…. but universal.

Additional Readings…

Do windmills cause illness?

Here in the US, a lot of the complaints about wind farms that make news focus on aesthetics: wealthy shorefront property owners don’t want the huge turbines interrupting their view, as in the Cape Wind controversy.  Even the 2012 documentary Windfall (trailer here and available on Netflix), about turbine installations in the rural New York town of Meredith, focused mainly on the issues of neighbor vs. neighbor fighting, corporate interests, and home values.  Though issues of environmental impact get casual mention, US coverage is usually about the money.

In other parts of the English-speaking world, the main controversy seems to be about illness.  This article from the UK’s MailOnline cites US researchers when establishing a scientific grounds for the the illnesses which, the author admits, “you might be tempted to dismiss it as a hypochondriac’s charter or an urban myth.”  To our east, Health Canada is responding to increased pressure by conducting a $1.8 million dollar study of wind farm noise in Ontario, where this news report was filmed:

There’s also this longer news piece about claims of wind farm illness in an Australian town called Waubra:

On the other hand, there are plenty of voices saying that wind farms are not correlated with illness: governments, energy companies, and this public health professor from Sydney, Australia who has made a list of seventeen studies of wind turbines that point to little or no impact on health. In a second article, he equates the phenomenon to mass hysteria, mentioning that no complaints of illness were made until after hundreds of turbines were already deployed.

There are examples in the urban myths recorded by Dr. Jan Brunvand that might resonate with this situation: the teenager who fried herself in a (newly popular) tanning bed, the old lady who didn’t understand how her (brand new) microwave worked when she popped in her wet poodle to dry it off, etc.  Television will hurt your eyes and cell phones will give you brain cancer.  New technology — and I think the gigantic turbines are different enough from previous generations of windmill to qualify — can confuse and frighten us.   Perhaps there are other factors that are leading to the discovery or exacerbation of the illnesses people near wind farms are mentioning.

Personally, I find the turbines lovely to watch at a distance, but I certainly wouldn’t want to live in the throbbing shadow of one, with that low pulse of sound all day and all night.  Is this a case where we’ve rushed ahead too quickly because of financial and social (environmental) pressures, without considering human factors, or is it a case of “modern technology illness”?

Paul Farmer at The Feast

Paul Farmer’s talk at The Feast — with Arcade Fire — on the 25th anniversary of the founding of Partners in Health:

http://new.livestream.com/feastongood/challenges/videos/4460531

(Sorry, can’t seem to embed this one.  The audio quality improves after the whispery first minute or two.)

Applying proxemics to the healthcare experience

Margaret Alrutz is the director of strategic marketing and experience design at Nurture by Steelcase — a company that provides furniture for medical settings.  In her talk at the Mayo Center for Innovation Transform 2012 symposium, she spoke about how the technology and practices of healthcare have changed, but the spaces have not been improved.  Citing the work of anthropologist Edward T. Hall, Alrutz described the research put into product design at Nurture, which included observing medical personnel as they actually performed their duties, often awkwardly as in the photo below:

Image from Margaret Alrutz’s presentation

The core content of her talk begins at about the 3:30 mark in the video:

While Nurture’s upscale furniture addresses first world healthcare inconvenience and unpleasantness, these research concepts can be applied elsewhere and one could argue that improving staff ergonomics and comfort for visitors would lead to better patient outcomes in many situations.  I can think of several personal medical experiences where details of my surroundings made a significant impact on the level of anxiety I felt.

The Nurture website has a number of case studies which outline problems they’ve tackled and the methodology that they used to find solutions, including observation, surveys, and interviews.  That sounds awfully anthropological, doesn’t it?