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Medical Education, Medicine and Literature, Medicine and Society, Mental Health, Patient Care

Using graphic art to understand the emotional aspects of disease

Using graphic art to understand the emotional aspects of disease

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When it comes to describing the feelings of hopelessness of depression, the fear and anxiety of having an operation or the unrelenting pain of a chronic condition, sometimes words are not enough. But, as some patients have discovered, art can be a powerful medium for portraying and translating these complex emotional experiences. Cartoons can also help future medical professionals empathize with patients and consider their experience from more than a clinical perspective.

An article published last week on the anthropology blog Teaching Culture explores the use of graphic art in medical anthropology courses. It takes its inspiration from Allie Brosh’s comic Hyperbole and a Half, in which she uses a crudely drawn figure to transport readers through the painful inertia and numbness of her depression. I stumbled upon this comic a few years ago when a dear friend was depressed. At the time, I didn’t understand how that could be or what that meant. Brosh’s bizarre, raw, and yes funny, comic resonated not only with what I saw my friend going through, but with my own experience, even though I was not depressed. It enabled me to empathize and to offer her support that was more relevant.

The article also describes a curriculum that incorporates “graphic pathographies” – graphic novels and comics about experiencing illness – into a course for pre-med students. The coursework “examines the multifaceted relations between biomedicine, culture, and the art of care, and places a special emphasis on how creative and humanistic approaches to illness and healing might enrich clinical practice.”

When I asked for his thoughts, Errol Ozdalga, MD, a professor of general medicine involved with the bedside medicine Stanford 25 initiative, commented:

Graphic art is an expression that is probably under-utilized. At Stanford, our guest services offers patients the chance to do guided imagery by expressing their feelings via drawing. Many physicians are unaware this service exists. It’s an opportunity to better understand our patients’ perspectives and promote the importance of connecting to patients among our students.

Previously: Engaging with art to improve clinical skills, Image of the week: a medical-focused manga comic and Stanford nurse’s whiteboard artistry brings cheer to patients, co-workers
Photo by Krystal T

Ethics, Genetics, History, In the News, Medicine and Society, Microbiology, Stanford News

Stanford faculty lend voices to call for “genome editing” guidelines

Stanford faculty lend voices to call for "genome editing" guidelines

baby feetStanford law professor Hank Greely, JD, and biochemist Paul Berg, PhD, are two of 20 scientists who have signed a letter in today’s issue of Science Express discussing the need to develop guidelines to regulate genome editing tools like the recently discovered Crispr/Cas9. Researchers are particularly concerned that the technology could be used to alter human embryos. From the commentary:

The simplicity of the CRISPR-Cas9 system enables any researcher with knowledge of molecular biology to modify genomes, making feasible many experiments that were previously difficult or impossible to conduct. […]

We recommend taking immediate steps toward ensuring that the application of genome engineering technology is performed safely and ethically.

We’ve written a bit here before about the Crispr system, which essentially lets researchers swap one section of DNA for another with high specificity. The potential uses, for both research or therapy, are touted as nearly endless. But, as Greely pointed out in an email to me: “Making babies using genomic engineering right now would be reckless – it would be unknowably risky to the lives of those babies, none of whom consented to the procedure. For me, those safety issues are paramount in human germ line modification, but there are also other issues that have sparked social concern. It would be prudent for science to slow down while society as a whole discusses all the issues – safety and beyond.”

The list of others who signed the commentary reads like a veritable who’s who of biology and bioethics. It includes Caltech’s David Baltimore, PhD; U.C. Berkeley’s Michael Botchan, PhD; Harvard’s George Church, PhD; and George Q. Daley, MD, PhD; University of Wisconsin bioethicist R. Alta Charo, JD; and Crispr/Cas9 developer Jennifer Doudna, PhD. (Another group of scientists published a similar letter in Nature last Friday.)

The call to action echos one in the 1970s in response to the discovery of the DNA snipping ability of restriction endonucleases, which launched the era of DNA cloning. Berg, who shared the 1980 Nobel Prize in Chemistry for this discovery, organized a historic meeting at Asilomar in 1975 known as the International Congress on Recombinant DNA Molecules to discuss concerns and establish guidelines for the use of the powerful enzymes.

Berg was prescient in an article in Nature in 2008 discussing the Asilomar meeting:

That said, there is a lesson in Asilomar for all of science: the best way to respond to concerns created by emerging knowledge or early-stage technologies is for scientists from publicly-funded institutions to find common cause with the wider public about the best way to regulate — as early as possible. Once scientists from corporations begin to dominate the research enterprise, it will simply be too late.

Previously: Policing the editor: Stanford scientists devise way to monitor CRISPR effectiveness and The challenge – and opportunity – of regulating new ideas in science and technology
Photo by gabi manashe

Behavioral Science, In the News, Medicine and Society, Research

Research prize for helping make mice comfy – and improving science

Research prize for helping make mice comfy - and improving science

OLYMPUS DIGITAL CAMERAA Stanford researcher has won accolades for a research paper that could help ease the lives of millions of laboratory mice – and improve the outcomes of research studies.

Joseph Garner, PhD, an associate professor of comparative medicine, and his colleagues observed that mice are routinely housed in cold conditions, which put stress on the animals. The mice compensate with physiologic changes that can skew the results of laboratory studies. For instance, temperature has been shown to affect immune function and tumor development in mice, among other factors. So cold stress in mice raises concerns not only for animal welfare but also for science.

Garner and his colleague, Briana Gaskill, PhD, proposed a simple solution: Give the animals some nesting material, and they’ll build a cozy home to regulate their temperatures. These comfy mice would be more physiologically comparable to humans, making them better research subjects, the researchers said. But one obstacle to adopting this simple solution was the question of how much nesting material is enough? In their prize-winning experiment, the researchers asked the mice how much nesting material they needed to give up a warm cage for a cold cage with a nest. The scientists found that between 6 and 10 grams of nesting material could effectively reduce cold stress in the animals – a standard now starting to be adopted in labs around the world.

The paper, published in 2012 in PLoS One, won a high commendation recently from the National Centre for the Replacement, Refinement & Reduction of Animals in Research, a leading, UK-based scientific organization that supports research which aims to minimize the need for animals in research and improve animal welfare.

The group said that the research results “have the potential to positively impact the welfare of millions of laboratory mice all over the world.”

Garner and Gaskill both traveled to London to receive the prize.

Previously: Stanford students design “enrichments” for lions, giraffe and kinkajou at the San Francisco Zoo, Nesting improves mouse well-being, could aid research studies and Stanford researcher’s easy solution to problem of drug testing in mice
Photo, which originally appeared in Stanford Medicine magazine, by Brianna Gaskill

Health Costs, Health Policy, In the News, Medicine and Society

“From volume to value:” Stanford expert to discuss Medicare reform in free webinar

Big changes are ahead for Medicare, the largest payer in the U.S. health-care system. By 2018, Medicare aims to tie at least half of all payments to the quality or value of care received, not the quantity of services rendered. Many critics of the existing system claim that it incentivizes doctors to do more procedures, which do not in the end improve health.

A panel of experts will discuss changes in how we pay for care, and whether payment reforms can improve quality while lowering costs, in a free public webinar this Thursday at 10 AM Pacific time. Heading the panel is Stanford’s Arnold Milstein, MD, MPH, director of the Clinical Excellence Research Center. That center focuses on new methods of health-care delivery that substantially reduce health spending while improving outcomes.

More details, including the link to register, can be found on the Reporting on Health website. The webinar is free and made possible by the National Institute for Health Care Management Foundation.

Previously: Medicare reforms cut costs and improve patient careExperts discuss high costs of healthcare and what it will take to improve the systemAnalysis: the Supreme Court upholds the health reform act (really) and Views on costs and reform from the “dean of American health economists” and New Stanford center to address inefficient health care delivery

Addiction, Media, Medicine and Society, Mental Health, Technology

Patient tells how social media helped her overcome the “shame” of her eating disorder

Patient tells how social media helped her overcome the "shame" of her eating disorder

3375657138_d025fc4092_bMany of us turn to our friends and families for encouragement when times are tough. So it’s no wonder that social media sites have also become important sources of emotional support for people with illnesses.

Recently, a story over on MindBodyGreen highlighted how one woman used Facebook as a tool to help her overcome the shame and deception that hampered her recovery from her eating disorder. As Lindsey Hall explains:

Two months into rehab, I was still struggling with letting go of the games of my eating disorder. Transitioning from in-patient to out, I’d been rapidly finding myself falling backwards instead of forwards.

Here I was, 24 years old, still living some days bagel by bagel, still opening the door to deception, and guilt and shame. I knew on some level that admitting to my eating disorder on social media would be a way for me to stop the show. I knew I needed to own this struggle in order to own all of myself, and to continue on my journey learning the art of self-acceptance.

As Hall describes in the story, her decision to make her eating disorder public on Facebook was a leap of faith with no guarantee that it was the right thing to do:

I’ll never really know what drove me to write that Facebook status, but I posted it anyway to the open arms of nearly 2,500 “friends” and family, to people that had met me once at a bar or sat next to on a plane. Having lived so long behind a smoke screen, I was ready to expose myself. I needed to feel bare, even while broken, in order to be able to clean my slate, and start from scratch in reconstructing my life.

The feedback Hall received from her gutsy post on Facebook and the subsequent blog posts and stories about her eating disorder haven’t always been positive, but as Hall explains, that wasn’t that point. Hall’s eating disorder is public information now, and this new level of accountability has helped her keep her eating habits on track.

Previously: Incorporating the family in helping teens overcome eating disordersA growing consensus for revamping anorexia nervosa treatmentPossible predictors of longer-term recovery from eating disordersGrieving on Facebook: A personal story and How patients use social media to foster support systems, connect with physicians
Photo by .craig

Addiction, FDA, Health Policy, Medicine and Society, Public Health, Public Safety

To keep edibles away from kids, marijuana policies must be “fully baked”

To keep edibles away from kids, marijuana policies must be "fully baked"

sanfran031606_fig1_highresDepending on your position, legal marijuana might raise images of stoners on every street corner or of users enjoying a private puff in their backyards. However you probably don’t picture a child munching on a pot-laden brownie she found in her kitchen cupboard.

But as Stanford legal experts Robert MacCoun, PhD, and Michelle Mello, JD, PhD, point out in a commentary published today in the New England Journal of Medicine, the loose state regulation of marijuana edibles creates some unnecessarily and potentially serious public health risks that should concern everyone.

Packaged in brightly colored wrappers, edibles often mimic popular sweets, but they contain a powerful dollop of tetrahydrocannabinol (THC), the chemical responsible for marijuana’s psychoactive effects. Some edibles contain multiple “servings” of THC per package.

Both Colorado and Washington — the two states with legal recreational marijuana — require “child-resistant” packaging and a warning to “keep out of the reach of children.” But edibles remain quite attractive to children, who may confuse them with regular candies and snacks, and potentially deceptive to adults, who may assume one bar is a just one serving. “I look at these packages and I get hungry just looking at them,” MacCoun said.

The edibles are not regulated as either a food or a drug by the U.S. Food and Drug Administration, because the federal government considers marijuana illegal. Legalizing states have been slow to fill the gap, and have done so incompletely, Mello said. “This is sort of a weird space that’s betwixt and between federal and state oversight,” she said.

It’s time for the medical community to get involved, MacCoun said. “Most people don’t understand the brain metabolizes chemicals ingested by mouth differently than those smoked.”

Ingested marijuana offers a delayed high, so people keep eating thinking they are fine. The intoxication lasts longer and is associated with more hallucinations and perceptual distortions, he said. “It’s almost like a different drug.”

For now, the issue is most pressing in Colorado and Washington, but many other states are considering legalizing recreational marijuana, including California, MacCoun said.

“We’re not taking some strong position these products should be banned. Sensible and fairly modest regulations would reduce the risk without greatly restricting people’s freedom to consume these products,” MacCoun said.

Previously: Discussing the American Academy of Pediatrics’ call to put the brakes on marijuana legalization, To protect teens’ health, marijuana should not be legalized, says American Academy of Pediatrics and Medical marijuana not safe for kids, Packard Children’s doc says
Photo by DEA

Cancer, Medicine and Society, Patient Care, Public Health, Videos

March marks National Colon Cancer Awareness Month: The takeaway? It’s preventable

March marks National Colon Cancer Awareness Month: The takeaway? It's preventable

What is the leading, preventable cause of death in the United States? I suppose the headline gave away my punchline, but remembering that colon cancer is both deadly and preventable is a timely exercise during March, which is National Colon Cancer Awareness Month.

Here’s what you need to know: Don’t wait until your colon hurts to come to the doctor. That won’t work. “Polyps and early tumors are often not symptomatic,” said gastroenterologist Uri Ladabaum, MD, in the above Stanford Health Care video.

It’s best to catch cancer 10 years before it appears, making 50 a key age to spot a cancer that often appears in the 60s,  said endoscopy director Subhas Banerjee, MD.

And a prime screening procedure, colonoscopy, “is no big deal,” said oncologist Mark Welton, MD. “They give you a little sedation and the next thing you know is you’re saying, ‘Are we done?'”

If physicians do spot the cancer early — or even later — they can often remove it, the physicians agreed. Chemotherapy and surgery are continuing to improve, making it more likely that patients can continue to live long, healthy lives.

Family history and race can leave you more vulnerable to colon cancer — African Americans are more likely to get, and die from, the disease — but in general, a fruit-and-vegetable packed diet, avoiding smoking and getting regular exercise can help stave off colon cancer.

Previously: The Big Bang model of human colon cancer, Stanford researchers explore new ways of identifying colon cancer and Study shows evidence-based care eliminates racial disparity in colon-cancer survival rates 

Chronic Disease, Health Policy, In the News, Medicine and Society, Medicine X

Patients with “invisible illnesses” speak out about challenges in their communities and workplaces

3477601702_765d0c9504_zWhat does a patient with chronic disease look like? Sometimes they look like everyone else, as many diagnosed with “invisible illnesses” are pointing out. In a recent NPR story, Carly Medosch, a former ePatient scholar at Stanford’s Medicine X, speaks about discrimination in the workplace for those whose health challenges are not immediately obvious. Medosch has been living with Crohn’s disease for 20 years and fibromyalgia for one year.

From NPR’s write-up:

For Medosch and others who struggle with an invisible disability, occasional hospital stays and surgeries are not the hard part. Mundane, everyday activities can be more difficult… Walking to the subway or even bending down to pick something up can take a lot out of her. But that isn’t apparent from the outside.

“I kind of call it being able to pass,” she says. “So I can pass as a normal, healthy, average person, which is great and definitely helps ease my everyday life — especially in interactions with strangers, getting your foot in the door in a situation like a job interview.”

But a foot in the door doesn’t mean people are sympathetic: Wayne Connell, who founded the Invisible Disabilities Association after his wife was diagnosed with Lyme disease and multiple sclerosis, is also quoted in the piece:

We’d park in disabled parking and she didn’t use a wheelchair or a cane, and so people would always give us dirty looks and scream at us… When they see someone in a wheelchair, OK, they get that they’re in a wheelchair. But what if they have chronic pain, what if they have PTSD — anything from cancer to peripheral neuropathy to autism?

Perhaps more importantly, disabled people have legal rights that are being ignored. Joyce Smithey, a lawyer who specializes in labor and employment, says it’s not uncommon for employers to say “We don’t do that as a policy” when people with invisible disabilities request accommodations. Smithy says:

And that’s a problem, because that person is not asking to partake of a benefit that’s offered in a policy; that person is asking for an accommodation they’re entitled to under the law.

Previously: When you say nothing at all: Living with an invisible illness, and How to cope with an “invisible illness”
Photo by Hugo Chisholm

Media, Medical Education, Medicine and Society, Research, Stanford News

Anthropologist discusses Wikipedia’s implications for health information

Anthropologist discusses Wikipedia's implications for health information

pid_24010Many of us turn to Wikipedia for quick answers to medical questions: What’s an amniocentesis, or what’s the difference between autism and Asperger’s?

Stanford University Press recently published Common Knowledge: An Ethnography of Wikipedia by anthropologist Dariusz Jemielniak, PhD, who studies managerial culture and has long been active in the Wikipedia community. As a fellow anthropologist, I was curious about his perspective and I wondered how medical knowledge is different in the age of Wikipedia.

When I interviewed the personable Jemielniak, he offered some insightful answers to my questions:

How empowering is it for people to have knowledge at their fingertips, on the internet? How is this different from finding information in reference books?

The basic difference is that on Wikipedia it’s usually put in lay terms. It’s readable, it’s comprehensible… With information, people have the perception that they know something about their condition. I’m not sure if they’re right – obviously, knowledge is not just one tidbit of information. On Wikipedia you can’t learn the relations between all kinds of knowledge – you need to have a medical degree to really understand that – but patients feel they are operating in a situation of informational deficit… Information on Wikipedia probably makes people have this feeling of empowerment, though I’m not really certain whether in all cases this contributes to their overall health. Sometimes they’ll misunderstand, misconstrue, or misinterpret because they don’t have the systematic knowledge.

In your ethnography, you discuss how the decentralized power in Wikipedia’s management changes the knowledge structure away from institutions and certified expertise. Without an authority structure, how do you determine who’s an expert?

On Wikipedia, the point is you don’t have to know if someone is an expert… Trust is transferred from formal expertise to procedure. If you follow procedure to the letter, by default you’re producing proper knowledge. If you use correct sources, if you cite all the sources that you found, if you’re doing justice to whatever you read, by default on Wikipedia it’s assumed that you’re just as good as an expert.

What about biases? In the book you say biases usually get toned down through copious editing.

I think on Wikipedia there’s a strong scientific bias of a sort. If a community of people are contradicting what is considered to be the scientific knowledge, quite likely those activist groups will be ignored. If there is consensus in the academic world, this is what will prevail in Wikipedia.

You say Wikipedia is never “published” but in an ongoing process of creation. Is this better for updates about new research?

By all means, I think obviously. Thirty seconds after the new pope was elected this new information was on Wikipedia. On Britannica you’d probably have to wait one year. Traditional media takes a year to go through the publishing process. The continuous release mode that Wikipedia operates on allows for instantaneous improvements and corrections, which is wonderful, it’s really great.

The pope is one thing, but research? How often are pages on research updated?

One of the problems is that research on Wikipedia is accurate at time of writing the article, but gets obsolete if people do not update. Articles that are most updated are ones people care most about… The real question is how many people actually read the incorrect information? Chances are, if there’s a big proportion of people who care about a topic… the more likely it is to be updated.

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LGBT, Medicine and Society, Research, Sexual Health, Stanford News

Asexuality: “That doesn’t mean there is something wrong”

Asexuality: "That doesn't mean there is something wrong"

7719085120_8119b3bfbe_zAs a scholar with ties in both humanities and medicine, I’m always interested when those realms intersect. Medical understanding of sexuality has been heavily influenced by social science and humanities research, and now a new frontier in sexuality studies, asexuality, is being pioneered at Stanford. 

Karli Cerankowski, PhD, who graduated from Stanford’s Program in Modern Thought and Literature last year and is a lecturer in Stanford’s Program in Writing and Rhetoric, is working on broadening our perception of healthy sexuality by including lower levels of sexual or romantic desire. Her work, recently spotlighted by Stanford News, traces people who might now identify as asexual through historical and pop cultural works, analyzing how they and society have interacted. She’s quoted in the Stanford News piece as saying that “society has normalized certain levels of sexual desire while pathologizing others. In a sense, it’s the social model that’s broken, not asexuals.”

Asexuality is a very new field of study, which exists under the wide umbrella of sexuality and gender studies. Cerankowski and her co-editor, Megan Milks, recently published the second book ever to be written on the topic. Thinking about the ways people experience their sexuality, desire, and gender informs how science and medicine understand optimal human health. Although sex and sexuality occupy a prominent place in our culture’s understanding of bodies, they are not prominent for every individual.

Cerankowski, again quoted in Stanford News, says:

If we recognize the diversity of human sexuality, then we can understand that there are some people who just don’t experience sexual attraction or have a lower sex drive or have less sex, and that doesn’t mean there is something wrong with them… We sort of prioritize sexual pleasure and sexual fulfillment in our lives, but we can think about the other ways that people experience intense pleasure, like when listening to music.

Pleasure and desire are important aspects of being human, but they don’t have to be tied to sex, or even to romance. On the wide spectrum of asexuality, there is room for those who engage neither in sex nor romance, as well as those who enjoy a romantic partnership and may engage in sex for reasons other than personal desire. This spectrum intersects with other aspects of sexuality that have also, though activism, become recognized as spectrums: sexual orientation, sexual identification, and gender identification.

Previously: Med students want more sexual health training, Changing the prevailing attitude about AIDS, gender and reproductive health in southern Africa and Living with disorders of sex development
Photo by trollhare

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