The Code Words of Breast-Cancer Awareness - NYTimes.com

A friend of mine's 12-year-old daughter has taken to wearing a bracelet, one of those rubber, Lance Armstrong-style affairs, that says on it, "I ❤ Boobies."

"Oh, yeah," she said, vaguely, when questioned about it. "It's for breast cancer."

Really?

It's hard to remember that, not so long ago, the phrase "breast cancer" was not something women spoke aloud, even among themselves. It wasn't until the early 1970s, with the high-profile diagnoses of the former child star Shirley Temple Black, the first lady Betty Ford and Happy Rockefeller that the disease went public. A short time later, Betty Rollin, an NBC-TV correspondent, published the groundbreaking memoir "First You Cry." Back then, her grief over losing her breast and the blow cancer dealt to her sex life was greeted with hostility by some critics and dismissed as frivolous. Mammography was just coming into use to detect early-stage tumors. The American Cancer Society was still resisting the idea of support groups for post-mastectomy patients. A woman like Rollin, some said, was supposed to be grateful that she qualified for a radical mastectomy, stuff a sock in her bra and get on with it.

Fast-forward to today, when, especially during October, everything from toilet paper to buckets of fried chicken to the chin straps of N.F.L. players look as if they have been steeped in Pepto. If the goal was "awareness," that has surely been met — largely, you could argue, because corporations recognized that with virtually no effort (and often minimal monetary contribution), going pink made them a lot of green.

But a funny thing happened on the way to destigmatization. The experience of actual women with cancer, women like Rollin, Black, Ford and Rockefeller — women like me — got lost. Rather than truly breaking silences, acceptable narratives of coping emerged, each tied up with a pretty pink bow. There were the pink teddy bears that, as Barbara Ehrenreich observed, infantilized patients in a reassuringly feminine fashion. "Men diagnosed with prostate cancer do not receive gifts of Matchbox cars," she wrote in her book "Bright-Sided."

Alternatively, there are what Gayle Sulik, author of "Pink Ribbon Blues," calls "She-roes" — rhymes with "heroes." These aggressive warriors in heels kick cancer's butt (and look fab doing it). Like the bear huggers, they say what people want to hear: that not only have they survived cancer, but the disease has made them better people and better women. She-roes, it goes without saying, do not contract late-stage disease, nor do they die.

That rubber bracelet is part of a newer, though related, trend: the sexualization of breast cancer. Hot breast cancer. Saucy breast cancer. Titillating breast cancer! The pain of "First You Cry" has been replaced by the celebration of "Crazy Sexy Cancer," the title of a documentary about a woman "looking for a cure and finding her life."

Sassy retail campaigns have sprung up everywhere, purporting to "support the cause." There is Save the Ta-Tas (a line that includes T-shirts and a liquid soap called Boob Lube), Save Second Base, Project Boobies (the slogan on its T-shirts promoting self-exam reads, "I grab a feel so cancer can't steal," though the placement of its hot-pink handprints makes it virtually impossible for them to belong to the shirt's wearer). There is the coy Save the Girls campaign, whose T-shirt I saw in the window of my local Y.M.C.A. And there is "I ❤ Boobies" itself, manufactured by an organization called Keep a Breast (get it?).

Sexy breast cancer tends to focus on the youth market, but beyond that, its agenda is, at best, mushy. The Keep a Breast Foundation, according to its Web site, aims to "help eradicate breast cancer by exposing young people to methods of prevention, early detection and support." If only it were that simple. It also strives to make discussion of cancer "positive and upbeat." Several other groups dedicate a (typically unspecified) portion of their profits to "educate" about self-exam, though there is little evidence of its efficacy. Or they erroneously tout mammography as "prevention."

There's no question that many women, myself included, experience breast cancer as an assault on our femininity. Feeling sexual in the wake of mastectomy, lumpectomy, radiation or chemo is a struggle, one that may or may not result in a new, deeper understanding of yourself. While Betty Rollin acknowledged such visceral feelings about breasts, she never reduced herself to them. And in the 1990s, the fashion model Matuschka's notorious photo of her own mastectomy scar (published on the cover of this magazine) demanded that the viewer, like breast- cancer patients themselves, confront and even find beauty in the damage.

By contrast, today's fetishizing of breasts comes at the expense of the bodies, hearts and minds attached to them. Forget Save the Ta-Tas: how about save the woman? How about "I ❤ My 72-Year-Old One-Boobied Granny?" After all, statistically, that's whose "second base" is truly at risk.

Rather than being playful, which is what these campaigns are after, sexy cancer suppresses discussion of real cancer, rendering its sufferers — the ones whom all this is supposed to be for — invisible. It also reinforces the idea that breasts are the fundamental, defining aspect of femininity. My friend's daughter may have been uncertain about what her bracelet "for breast cancer" meant, but I am betting she got that femininity equation loud and clear.

I hate to be a buzz kill, but breast cancer is just not sexy. It's not ennobling. It's not a feminine rite of passage. And, though it pains me to say it, it's also not very much fun. I get that the irreverence is meant to combat crisis fatigue, the complacency brought on by the annual onslaught of pink, yet it similarly risks turning people cynical. By making consumers feel good without actually doing anything meaningful, it discourages understanding, undermining the search for better detection, safer treatments, causes and cures for a disease that still afflicts 250,000 women annually (and speaking of figures, the number who die has remained unchanged — hovering around 40,000 — for more than a decade).

As for me, I bear in mind the final statement that a college pal of mine who was dying of breast cancer (last October, in the midst of all that sexy pink) made to her younger brother. She was about to leave two young sons to grow up without a mother; her husband to muddle through without his wife. She could barely speak at the time, barely breathe. But when her brother leaned forward, she whispered two words in his ear: "This sucks."

http://www.nytimes.com/2010/11/14/magazine/14FOB-wwln-t.html?hp

A Relentless Opponent Stalks the Locker Room - NYTimes.com

On Saturday, when Penn plays Harvard at Franklin Field, much will be the same as a year ago. A share of the Ivy League title will be at stake — Harvard (4-1 in the league) must beat Penn (5-0) to get the tie — and the teams return 26 starters combined.

Yet the most significant player is the one who will be missing. Penn's Owen Thomas, a junior and a team captain, committed suicide in April at age 21. Researchers at Boston University found that he died with early stages of chronic traumatic encephalopathy, a brain disease linked with cognitive impairment and depression primarily found in boxers and N.F.L. players. Owen was the first active college player to be found to have had the condition, which can be determined only after death.

Owen was very much like me. I was Harvard's captain last year; we played against each other in last year's game. We were both second-team All-Ivy defensive linemen. We were both studying business — Owen was enrolled in the Wharton School. His suicide and condition have left me unable to shake his memory.

When I go to Franklin Field on Saturday, it will already be the most heartbreaking loss of my athletic career.

I'm not claiming familiarity with the complexities of Owen's personal life. While I know the pressures and demands on an Ivy League student and football captain, I don't know the additional pressures and demands (and subsequent emotions) that Owen was dealing with. What I do know is the pressures and demands and emotions clearly felt inescapable, a sensation that is normal in varying degrees.

Concussions and other brain trauma on the football field do not cause someone to commit suicide. What they do cause are metabolic alterations that can lead to depression and contribute to changes in a person's outlook and decision-making — with the most disastrous and undoubtedly complicated cases perhaps ending in suicide.

To be around recently concussed football players is to know that this is serious brain damage. Their eyes seem glassy. They have trouble retaining short-term information. They appear tired and glum.

Having played football for the past 10 years, I've seen what a compilation of brain traumas can do to a person.

The solution is not to stop playing football. Football offers structure and discipline to players and builds communities in meaningful ways.

Fining or suspending players for helmet-to-helmet contact — which the N.F.L. has said it will now do earnestly — is not the solution either.

The hits probably causing most of the cumulative damage are too routine and hidden to be punishable. If they were, every lineman in the N.F.L. would be broke. For the same reasons, the traumas are rarely large enough for a doctor to know to treat them; Thomas developed C.T.E. without ever being known to have sustained a concussion in more than 10 seasons, from youth football through college.

The football community is now hyperconscious — as it should be — about concussions. Now it is time for us to be just as aware of the depression that can follow. Not all concussions lead to suicide, but they can and sometimes do. And football incubates these types of impacts. Although it differs from boxing, in which violence is the primary show, football has a brutality that some fans manage to ignore. It's part of the sport.

This should be the jumping-off point for changing the culture around depression and sports. If concussions can lead to depression and depression can lead to suicide, then even old-school football needs to be as vigilant in identifying and treating depression as it is with concussions.

We must create an environment where a football player — or any athlete — can walk into a training room and tell someone that something is wrong and that, no, this injury doesn't just need ice or a rubdown.

Depression requires attention, diagnosis and therapy. We need to foster an environment where athletes understand that depression, like a sprained ankle, is not their fault — and that we are all on the same side to help them heal.

Accomplishing this is everyone's responsibility. Casting football players as having "concussion-induced depression" only stereotypes and isolates them as their herd's black sheep, when the message should be that this condition is not abnormal at all.

I've had very serious heart-to-hearts with friends who thought about suicide. Some have a history of concussions, some do not. But either way, they needed help. When an athlete is suffering from depression, our immediate response shouldn't be, "Did you have concussions?" but rather, "Tell me what's troubling you."

Concussion research is a vitally important offense to advance what we can do to prevent these situations. Being emotionally available to struggling athletes is the best defense not to lose ground in the meantime.

Owen Thomas, my rival one year ago, died with chronic traumatic encephalopathy. That is not the end of the discussion, but a very difficult beginning.

Carl Ehrlich was captain of the 2009 Harvard football team.

http://www.nytimes.com/2010/11/13/sports/ncaafootball/13penn.html?nl=todaysheadlines&emc=a27

Anorexics and unplanned pregnancies - Pregnancy - Salon.com

A woman who has starved herself to the point of losing her period hardly seems a candidate for pregnancy, planned or otherwise. But a study published in the November issue of Obstetrics & Gynecology finds that anorexics are shockingly at a much higher risk for unplanned pregnancies. Researchers at the University of North Carolina at Chapel Hill and the Norwegian Institute of Public Health found that 50 percent of the self-identified anorexics surveyed reported having had an unplanned pregnancy, compared to 19 percent of women without eating disorders. It follows that more anorexics reported having terminated a pregnancy than non-anorexics (24 percent versus 15 percent).

The researchers explain these counter-intuitive findings like so, "The high prevalence of menstrual disturbance has contributed to the (mis)conception that women with anorexia nervosa are unlikely to conceive." In one of the funnier lines ever to be included in the sober press release for a scientific study, lead researcher Cynthia M. Bulik simply says: "Anorexia is not a good contraceptive." You see, just because a woman isn't menstruating doesn't mean she can't get pregnant. The more you know! Somehow that hugely important fact never made it into my high school sex-ed curriculum. In fact, I'm embarrassed to admit that at the age of 26 -- having written about women's issues five days a week for the past four years -- this is the first time I've heard it.

The study speculates that it's "possible that absent or irregular menstruation and the belief that menstrual irregularities reduce the risk of conception are associated with reduced adherence to contraception guidelines or instructions, increasing the risk of unplanned pregnancy" -- but that hypothesis still has to be borne out in further research. Regardless, it seems a safe bet to at least begin better educating women, anorexic and otherwise, about the risk of pregnancy even if they aren't menstruating.

http://www.salon.com/life/pregnancy/index.html?story=/mwt/broadsheet/2010/11/12/anorexia_pregnancy

Siddhartha Mukherjee on Cancer, ‘Emperor of All Maladies’ - Review - NYTimes.com

On its first page "The Emperor of All Maladies" sets forth its intention: to be a definitive history of how cancer has been understood, treated, feared and politicized throughout all of recorded human history. That's a staggeringly tall order. Yet the author, Dr. Siddhartha Mukherjee, seeks to make it even taller. His book also aspires to be "a biography of cancer," even though Dr. Mukherjee (a cancer specialist and researcher with stellar credentials) cannot exactly explain what that phrase means.

"This book is a 'biography' in the truest sense of the word," he claims at the outset. It is "an attempt to enter the mind of this immortal illness, to understand its personality, to demystify its behavior." He ventures even farther into the realm of the impossible when he promises to address these two questions: "Is cancer's end conceivable in the future? Is it possible to eradicate this disease from our bodies and societies forever?"

With objectives so vast, and with such an beautiful title, "The Emperor of All Maladies" is poised to attract a serious and substantial readership. And it is an informative, well-researched study. But it is in no way a biography of anyone or anything, and Dr. Mukherjee winds up acknowledging as much before his book is over.

He points out that there is both folly and scientific partisanship in treating "cancer, a shape-shifting disease of colossal diversity," as "a single, monolithic entity."

Likewise, questions about whether cancer can be eradicated eventually run up against hard reality. "Cancer is a flaw in our growth, but this flaw is deeply entrenched in ourselves," the book says. "We can rid ourselves of cancer, then, only as much as we can rid ourselves of the processes in our physiology that depend on growth — aging, regeneration, healing, reproduction."

How did Dr. Mukherjee allow his otherwise sophisticated book to be presented so reductively? It's an all too fitting flaw, since the same kind of oversimplification has long been the bane of cancer theory. "The Emperor of All Maladies" provides a survey of the different ways in which cancer has been understood in different eras, from the Greeks' idea that it was caused by black bile, one of the four liquid humors, to the 19th-century conviction that the most drastic and disfiguring surgery would lead to the best cure. He also writes about the fund-raising, Nixon-era idea of waging war on cancer as if illness were an enemy to be faced in battle.

The biographical aspects of "The Emperor of All Maladies" have more to do with the personalities of anti-cancer combatants than with concocting one for cancer itself. This book pays considerable attention to pioneering figures like William Stewart Halsted, an advocate in the 1870s and 1880s of extreme breast cancer surgery; Sidney Farber, who in the 1940s made great breakthroughs in treating childhood leukemia with dangerously toxic chemicals; and Min Chiu Li, who in the 1950s lost his job at the National Cancer Institute for providing chemotherapy to patients whose symptoms had receded, even though this extended therapy meant the first chemotherapeutic cure of cancer in adults.

In a maneuver as transparently glib as that of calling his book a biography, Dr. Mukherjee also inserts occasional glimpses of his own patients, whose experiences are markedly overdramatized. ("It was now 9:30 in the morning. The city below us had stirred fully awake. The door shut behind me as I left, and a whoosh of air blew me outward and sealed Carla in.") But none of this personal material is as compelling as the story of how cancer research has progressed through so many different phases.

Here Dr. Mukherjee's writing is at its most candid and grim. The overarching point made by his narrative is that the whole subject of cancer is dauntingly complex. Even the statistics about mortality rates are tricky, since so much of researchers' thinking about the prevalence of cancer depends on how they measure progress. And the unmistakable effect of our progress in curing other previously fatal diseases is to make cancer, which is most often found in older patients, look more prevalent than ever.

"The Emperor of All Maladies" is at its most honest in describing the push-pull dynamics of scientific progress. Dr. Mukherjee links a decline in extremely punishing chemotherapy regimens to the fact that patients became less passive. (He credits much of this forcefulness to AIDS activists.) He describes the conflicting interests of surgeons and chemotherapists. He writes most promisingly about the effects of genome mapping on scientists' ability to understand how cancers progress, and he cites the similar ways in which different cancers create genetic pathways within mutating cells. He is confounding yet fair in writing that "this is either very good news or very bad news."

Late in "The Emperor of All Maladies" Dr. Mukherjee provides especially apt metaphors for a subject so difficult to grasp. He quotes the Red Queen fromLewis Carroll's "Through the Looking Glass" to describe the alacrity with which research must move: "It takes all the running you can do, to keep in the same place." He describes one patient's maneuvers to keep up with her illness as "like watching someone locked in a chess game." And he says that the patterns in cancer research repeat themselves just as history does. Among the constants in this struggle are "the hypnotic drive for universal solutions" and "the queasy pivoting between defeatism and hope."

http://www.nytimes.com/2010/11/11/books/11book.html?nl=todaysheadlines&emc=a27

CureTogether Blog » Ongoing Studies

CureTogether was almost born as "Patient-Driven Research" (but the URL was too long).

Bringing patients into research as active partners is one of our big missions at CureTogether.

Partnering with universities, research organizations, and self-experimenters will help us to make new discoveries and connections faster, ask better questions about patient data, and validate that online methods for data gathering are effective for research purposes.

Here are the studies and partnerships we have so far:

Emory University
Adam Sperduto and Suephy Chen
Feasibility and Reliability of Internet Crowdsourcing Data Collection with Dermatologic Quality of Life Assessment Tools

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Transparency Life Sciences
Tomasz Sablinski
Open Source Clinical Trial on Low-Dose Naltrexone

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Carnegie Mellon University
Kateryna Kuksenok and Jen Mankoff
Dynamic filtering visualization of CureTogether data (in progress)

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Stanford University
Diana MacLean and Jeff Heer
Analysis and visualization of community dynamics and data over time (jn progress)

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Drexel University
Will Dampier
Building an adaptive recommendation system for treatments (in progress)

http://curetogether.com/blog/ongoing-studies/

Cognitive Design » Blog Archive » Quantitative Crowdsourcing Disrupts Healthcare?

In an earlier post, we explored PatientsLikeMe, a unique site for crowdsourcing patient data in great quantitative detail.  The idea is that patients share tons of personal health data by tracking symptoms, lab results, interventions and the outcomes produced in quantitative form. This creates a river of data for helping each other and is invaluable for researchers, insurers, drug companies and medical device companies looking to develop better health solutions.   An exciting and potential disruptive way to crowdsource health innovations.

But will an open source approach to clinical research catch on, especially will all the concerns about privacy?  It looks like it is. Check out CureTogether. They have 13,000 members in 112 countries contributing 1.2 million data points on 600 conditions.  All the data is supplied by patients. They are actively leveraging that it in 6 university-based studies. It is interesting to note that the most active area is anxiety with some 2000 members.

Patient sourcing (patients working on cures through a crowdsourcing model), especially when it is quantitative can change the time, cost and quality of clinical research by a factor of 10. As they point out on the website capturing quantitative is the key:

"CureTogether is about quantifying the collective patient experience. While most other patient support sites have focused on stories or information from experts, we focus on quantitative data across over 600 patient-contributed conditions. Individual data is kept private, but the anonymized aggregate data is shared openly to maximize discoveries that can be made."

Obviously this involves considerable work for patients.  But the return on effort is outstanding.  Members get unique advice, daily encouragement and the opportunity to contribute to something of major importance. Powerful cognitive design.

http://newvaluestreams.com/wordpress/?p=1435

Treatment Ratings and Reviews for 640 Conditions. Self Tracking. Free Tools to Help You Manage Your Health. | CureTogether.com

Imagine patients around the world coming together to share quantitative information on over 500 medical conditions. They talk about sensitive symptoms and compare which treatments work best for them. They track their health. New research discoveries are made based on the patient-contributed data.

CureTogether's team includes thousands of members around the world, sharing what works and what doesn't for hundreds of health conditions.

http://curetogether.com/

Blog:

http://curetogether.com/blog/about/what-people-are-saying/

The Body Chronic

What gives me the right to have this blog? Well, I live with numerous chronic conditions and chronic pain on a daily basis. When I began being diagnosed with these things--and even before--there was no place on the internet that helped me adequately research everything. Instead, I was forced to piece information together myself.

Being a little older and a lot wiser, I decided that no person should go through what I went through to get the basic information and support necessary to navigate the waters surrounding chronic illness. I started this blog in the hopes of creating a support network for those who have a daily interaction with The Body Chronic.

http://bodychronic.blogspot.com/

For Many, Health Apps Are Just Not Part Of The Routine : Shots - Health News Blog : NPR

Almost 20 percent of mobile phone users have used their phones to look up health or medical information online at some point in their lives, but only 9 percent of us, on average, use mobiles to manage our health in a big way.

This new survey, by the Pew Internet and American Life Project, found that just 9 percent of mobile phone owners use phone apps that help them track or manage their health.

That's despite the fact that mobile health apps have been touted by us and others as the Next Big Thing, a way for busy people to manage their weight, eat healthier, quit smoking or track their exercise.

Even Susannah Fox, author of the new Pew study, has a confession to make: "I don't have a single health app on my phone," she tells us.

And an unscientific survey of NPR Science Desk staffers finds few health apps, despite the high number of health geeks.

Two employees had downloaded Kids Doc, a symptom-checker from the American Academy of Pediatrics that helps parents figure out whether a child is sick enough to need medical care (The KidsDoc app costs $1.99, but the symptom-checker is available free online.)

One editor uses Epocrates RX to look up drug information when her husband or children are sick. And one reporter has used "The Brave Monkey Pirate", the IStoryTime version of a book by Hayes Roberts, to soothe a child's fears about getting a shot.

So who is actually using mobile health apps?

Not surprisingly, people ages 18 to 29 were more likely to use mobile health apps, with 15 percent doing so. Also, African American mobile phone users are more likely to be into mobile health — 15 percent say they use health apps, compared to 7 percent of whites and 11 percent of Latinos.

Public health officials are keen on using mobile technology to reach minority populations, and the data suggests they may be headed in the right direction.

The high rate of health-app use among African Americans and Latinos makes sense. Both blacks and Latinos are more likely to own a mobile phone than whites, use it for texting more than whites — and are much less likely to have broadband Internet access at home.

http://www.npr.org/blogs/health/2010/10/20/130703545/for-many-of-us-health-apps-are-just-not-part-of-our-routine

The Social Life of Health Information | Pew Research Center's Internet & American Life Project

Americans' pursuit of health takes place within a widening network of both online and offline sources. Whereas someone may have in the past called a health professional, their Mom, or a good friend, they now are also reading blogs, listening to podcasts, updating their social network profile, and posting comments. And many people, once they find health information online, talk with someone about it offline.

This Pew Internet/California HealthCare Foundation survey finds that technology is not an end, but a means to accelerate the pace of discovery, widen social networks, and sharpen the questions someone might ask when they do get to talk to a health professional. Technology can help to enable the human connection in health care and the internet is turning up the information network's volume.

The findings in this report come from a national phone survey done by the Pew Research Center's Internet & American Life Project in partnership with the California HealthCare Foundation. Some 2,253 adults, age 18 and older, were interviewed in December 2008 about the social impact of the internet on health care. The interviews were conducted in English or Spanish and included 502 cell-phone interviews.

http://pewinternet.org/Reports/2009/8-The-Social-Life-of-Health-Information.aspx

report:

http://pewinternet.org/Reports/2009/8-The-Social-Life-of-Health-Information/01-Summary-of-Findings.aspx

Interview: The social life of health information | Pew Research Center's Internet & American Life Project

When you get sick, is your first stop Google or WebMD? According to a survey by Pew Research Center's Internet and American Life Project, 61 percent of Americans turn to the web for online medical advice and information. And 20 percent of Americans have posted information about their health conditions at online forums. And new companies are popping up everyday that are connecting people via online communities so they can do everything from lose weight to start trials for new medications. WBUR spoke with Susannah Fox, associate director of digital strategy at Pew Internet and Mike Zani, CEO of Shape Up The Nation. You can listen to the conversation at WBUR.org.

http://www.pewinternet.org/Media-Mentions/2010/Here-and-now.aspx

How the factory floor inspired a new model for health care - The Globe and Mail

When Canada's premiers pledged six years ago to shorten the queues for cataract surgery and hip replacements, one of the answers put forward was private health care. Many of the promises have been delivered, through a combination of public and private actors that found new ways to improve services and lower costs within the publicly funded system.

One payoff has yet to come, though. Motivated by an injection of competition, doctors have found ways to perform certain surgeries far more quickly and cheaply than before. But provincial health bureaucracies have been slow to make similar adjustments to the fees they pay for those procedures.

On a recent Wednesday afternoon, Jane Swarney is relaxing in the recovery room at the Kensington Eye Institute, feeling relieved that the operation to remove a cataract from her right eye went so smoothly.

The retired nurse has worked in hospitals in Toronto, New York and Honolulu. She says her experience at Kensington was "first class," from the staff who patiently told her what to expect to the wood-panelled reception area that looks like a hotel lobby and her comfortable reclining chair that folds back to become an operating room table.

"It was just a non event," she says. "I would gladly come and have this done all over again."

Ms. Swarney was one of 27 patients that Wednesday, a slow day for one of the country's busiest cataract clinics. It has single-handedly made a huge dent in the waiting list for cataract surgery in the Toronto area, where the wait is now 127 days for the surgery, down 60 per cent from 2005.

Kensington is a leader in adapting manufacturing practices to medical care. From its unassuming perch on the sixth floor of a medical building in downtown Toronto's eclectic Kensington Market neighbourhood, the private, not-for-profit clinic is quietly bucking the trend of health-care costs that seem to go nowhere but up.

When Kensington opened its doors in January, 2006, it received $5-million in funding to perform 6,700 cataract surgeries a year. Two years later, the clinic had increased its caseload to 7,200 patients a year with the same budget.

"We did that through operating efficiencies," says Brian McFarlane, chief executive officer of the clinic.

More ...

http://www.theglobeandmail.com/news/national/time-to-lead/healthcare/how-the-factory-floor-inspired-a-new-model-for-health-care/article1792676/singlepage/#articlecontent

Patient Voices - Audio - NYTimes.com

A diagnosis of a chronic disease, mental illness or condition can change one's life in many ways. In Patient Voices, we feature first person accounts of the changes, challenges and rewards patients face as they cope with various health issues.

http://www.nytimes.com/interactive/2009/09/10/health/Patient_Voices.html

The Headache That Wouldn’t Go Away - NYTimes.com

"My arm — something is biting my arm!" The 26-year-old woman struggled to sit up in bed. What's wrong? her husband asked, alarmed and suddenly wide awake. His wife didn't seem to hear him. Suddenly, her whole body began to jerk. Although he had never seen a seizure, the young man knew immediately that this was one. After a long and terrifying minute the jerking stopped and his wife lay quiet with her eyes closed, as if she were asleep. When he couldn't wake her, he picked up the phone and dialed 911.

In the emergency room, the young woman was sleepy and confused. She didn't remember the seizure. All she knew was that she felt bad earlier that day. Her shoulders ached and she had these strange shooting pains that ran up her neck, into her skull. She had a wicked headache too. Although she had this headache for months, it was much worse that day. At home she took a long hot bath and went to bed. She woke up in the ambulance.

She'd had no fever, she told the E.R. doctor, and hadn't felt sick — just sore. And now she felt fine. Her arm didn't hurt — in fact she couldn't remember that it had ever hurt. She still had the headache, though. She didn't smoke, didn't drink and took no medications. She moved to Boston from Bolivia several years earlier to get married and now had 15-month-old. Other than mild confusion, the patient's physical exam was normal. The E.R. doctor ordered blood tests to look for evidence of infection along with a CT scan of her head to look for a tumor.

Her headache started the year before, when she was pregnant. Before that she had the occasional headache, but back when her daughter was barely a bump, she got one that simply never went away. She told the midwife, who said it wasn't unusual to get headaches during pregnancy. But to the patient, this headache seemed different. It was like a vise on her head, just over her eyes. The pressure wasn't excruciating, just unrelenting. She took Tylenol, and that sometimes helped, but the headache always came back. Sometimes it even woke her up in the middle of the night. Finally the midwife sent her to her primary-care doctor.

Her doctor, a young internist in her first year of training (who asked that her name not be used), was worried about this headache. It had persisted for weeks and woke her patient up from sleep — that was unusual. The doctor recalled how happy the patient was when she called her with the news of her positive pregnancy test. And now barely showing at five months, she looked like the picture of expectant health. Had she had any weakness or numbness? Was there any loss of hearing or blurry vision? No, no and no. Well, she did have blurry vision, but that's only because she hated wearing her glasses.

The doctor focused her exam to look for any hint that this headache might be because of some kind of brain injury. She looked into the patient's eyes with the ophthalmoscope, scanning the retina for any signs of increased pressure inside the brain. She checked the patient's strength, coordination and reflexes. Nothing. Her exam was completely normal.

Headaches are common, accounting for some 18 million doctor visits a year. Most are completely benign, but up to 3 percent of patients with a headache severe enough to send them to the emergency room will have something worth worrying about. Doctors are taught to look for three types of potentially dangerous headaches: the first, the worst and the cursed. The first headache in someone who doesn't have headaches; the worst headache ever in someone who does; or a headache "cursed" by symptoms like weakness or numbness. A CT scan should be considered for these possibly life-threatening headaches. This headache fit into none of these informal categories.

This patient was woken up from sleep by her headaches — that's unusual, but the doctor knew that it was not one of the recommended reasons for getting a CT scan. And she was pregnant. A CT scan of the head requires a relatively high dose of radiation. Was the doctor's concern great enough to risk exposing the fetus based only on this somewhat unusual symptom? Not yet. Especially since there was another possible cause of the persistent headache — eyestrain. The patient was no longer wearing her glasses; she didn't even own a pair, she confessed. She should get new glasses, the doctor suggested, and see if wearing them helped her headache. If not, she should come back. Perhaps they would get a CT scan at that point.

It was more than a year later when the patient next came to see the doctor. She had gotten glasses, and though the headaches hadn't stopped, they seemed a bit better. It was no longer a constant pain. She had one maybe three to four times a week, and it lasted for a few hours and went away with a little ibuprofen. Besides, she was really too busy with the baby and her job to worry too much about them.

Then, six months after that last visit, she had this middle of the night seizure. In the E.R., the blood tests were all normal. Not so the CT scan. On the right side of the patient's brain, just over the eye, there was a bright circle of white, the size of a dime. Not a brain tumor. No, the radiologist said, this was a tiny worm, a larvae, the young offspring of a tapeworm. The parasite, known asTaenia solium, is transmitted through undercooked pork contaminated by tapeworm eggs. Once in the body, the eggs hatch and then attach themselves to the intestinal wall and within a few months can grow to up to 15 feet or more. A mature tapeworm will then release hundreds of eggs into the gut every day. If any of these are ingested, they can hatch, enter the bloodstream and, once there, can lodge almost anywhere in the body, although they usually end up in muscle and in the brain.

Although unusual in the United States, pork tapeworm is common in the developing world. And having these larvae in the brain, a condition known as neurocysticercosis, is the most common cause of adult epilepsy in South and Central America. The patient was probably infected with this tapeworm years earlier when she lived in Bolivia. This kind of infection can be asymptomatic for years. Once the doctors saw the CT scan, the patient was treated with an antiparasite medication for 30 days and started on antiseizure medications.

When her primary-care doctor heard that her patient had been diagnosed with neurocysticercosis, she scoured the patient's hospital chart and then her own notes. How had she missed that? What should she have done differently? She discussed the case with several of her teachers, who assured her that she had done everything properly. One of the frustrating truths in medicine is that it is possible to do everything right and still be wrong and miss the diagnosis.

The young doctor called the patient to see how she was doing and to schedule a follow-up visit. She was disappointed, though not completely surprised, when the patient chose to see a different doctor at the clinic.

In thinking about this case, the doctor's greatest regret is that she didn't get the chance to follow up on her patient and find out that her headaches didn't go away by just wearing glasses. When patients don't come back, the temptation is to assume they've gotten better. That is often not the case. Sometimes they've just given up. Now when she has a patient she is worried about, the doctor doesn't tell them to call her if they don't get better. Instead she has them make an appointment to come back in a couple of weeks. "If they are all better," the doctor told me, "they can cancel the appointment. But just in case they aren't — the way this woman wasn't — they can come back, and I can have another shot at the whole thing."

Lisa Sanders is the author of "Every Patient Tells a Story: Medical Mysteries and the Art of Diagnosis."

http://www.nytimes.com/2010/11/07/magazine/07FOB-Diagnosist-t.html?ref=magazine

A Different Kind of Sex Talk With Teens - NYTimes.com

The age at which Europeans and Americans first have sex is the same — 17, on average, on both sides of the Atlantic. The percentage who use birth control from the start? In Holland it's 64 percent and in the United States it's 26 percent. The percentage who have regrets about their first time, wishing they had waited: 63 percent of boys and 69 percent of girls in the United States, and only 5 percent of boys and 12 percent of girls in the Netherlands. Teen pregnancy rates: three to six times higher here than in Western Europe. S.T.D. rates: 20 to 30 times higher here than Holland. H.I.V. rate? Theirs is six times lower.

Those are some of the contrasts presented in a slideshow on Slate.com, which looks at the different ways Europeans and Americans talk, in public and private, about sex. Rachel Phelps (who works at Planned Parenthood in the United States) concludes that while American parents, advertisers and public-service announcements aim to scare teens, those in Europe are matter of fact and humorous.

By way of example, take a look at this American condom ad. "The idea is that sex is like a big industrial fire — dangerous, scary and bad," Phelps writes. "And having sex without a condom is like fighting a big industrial fire naked — very bad. But does that mean that having sex with a condom is like fighting a big industrial fire in a spacesuit? Not very appealing. Why would this image motivate teenagers to use condoms?"

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http://parenting.blogs.nytimes.com/2010/11/05/a-different-kind-of-sex-talk-with-teens/?ref=magazine