It's 2015—when we feel sick, fear disease, or have questions about our health, we turn first to the internet. According to the Pew Internet Project, 72 percent of US internet users look up health-related information online. But an astonishing number of the pages we visit to learn about private health concerns—confidentially, we assume—are tracking our queries, sending the sensitive data to third party corporations, even shipping the information directly to the same brokers who monitor our credit scores. It's happening for profit, for an "improved user experience," and because developers have flocked to "free" plugins and tools provided by data-vacuuming companies.
In April 2014, Tim Libert, a researcher at the University of Pennsylvania, custom-built software called webXray to analyze the top 50 search results for nearly 2,000 common diseases (over 80,000 pages total). He found the results startling: a full 91 percent of the pages made what are known as third-party requests to outside companies. That means when you search for "cold sores," for instance, and click the highly ranked "Cold Sores Topic Overview WebMD" link, the website is passing your request for information about the disease along to one or more (and often many, many more) other corporations.
According to Libert's research, which is published in the the Communications of the ACM, about 70 percent of the time, the data transmitted "contained information exposing specific conditions, treatments, and diseases." That, he says, is "potentially putting user privacy at risk." And it means you'll probably want to think twice before looking up medical information on the internet.
Here's what's happening in a bit greater detail: Let's say you make a search for "herpes." Plugging that query into a search engine will return a list of results. Chances are, whatever site you choose to click on next will send information not just to the server of the intended site—say, the Centers for Disease Control, which maintains the top search result from Google—but to companies that own the elements installed on the page. Here's why.
When you click that CDC link, you're making a so-called "first party request." That request goes to the CDC's servers, and it returns the HTML file with the page you're looking for. In this case, it's "Genital Herpes - CDC Factsheet," which is perhaps the page on the internet you'd least want anyone to know you're looking at. But because the CDC has installed Google Analytics to measure its traffic stats, and has, for some reason, included AddThis code which allows Facebook and Twitter sharing (beckoning the question of who socializes disease pages), the CDC also sends a third party request to each of those companies. That request looks something like this—http://www.cdc.gov/std/herpes/STDFact-Herpes.htm—and makes explicit to those third party corporations in its HTTP referrer string that your search was about herpes.
Thus, Libert has discovered that the vast majority of health sites, from the for-profit WebMD.com to the government-run CDC.gov, are loaded with tracking elements that are sending records of your health inquiries to the likes of web giants like Google, Facebook, and Pinterest, and data brokers like Experian and Acxiom.
From there, it becomes relatively easy for the companies receiving the requests, many of which are collecting other kinds of data (in cookies, say) about your browsing as well, to identify you and your illness. That URL, or URI, which very clearly contains the disease being searched for, is broadcast to Google, Twitter, and Facebook, along with your computer's IP address and other identifying information.
"The underlying significance of the 91 percent figure is that this is utterly endemic across all types of sites," Libert told me, "this isn't just commercial sites who need to turn a profit, these are organizations you trust: the government, non-profits, universities."
More ...
http://motherboard.vice.com/read/looking-up-symptoms-online-these-companies-are-collecting-your-data?
Thursday, February 26, 2015
A Faster Way to Try Many Drugs on Many Cancers - NYTimes.com
Chemotherapy and radiation failed to thwart Erika Hurwitz's rare cancer of white blood cells. So her doctors offered her another option, a drug for melanoma. The result was astonishing.
Within four weeks, a red rash covering her body, so painful she had required a narcotic patch and the painkiller OxyContin, had vanished. Her cancer was undetectable.
"It has been a miracle drug," said Mrs. Hurwitz, 78, of Westchester County.
She is part of a new national effort to try to treat cancer based not on what organ it started in, but on what mutations drive its growth.
Cancers often tend to be fueled by changes in genes, or mutations, that make cells grow and spread to other parts of the body. There are now an increasing number of drugs that block mutations in cancer genes and can halt a tumor's growth.
While such an approach has worked in a few isolated cases, those cases cannot reveal whether other patients with the same mutation would have a similar experience.
Now, medical facilities like Memorial Sloan Kettering Cancer Center in New York, where Mrs. Hurwitz is a patient, are starting coordinated efforts to find answers. And this spring, a federally funded national program will start to screen tumors in thousands of patients to see which might be attacked by any of at least a dozen new drugs. Those whose tumors have mutations that can be attacked will be given the drugs.
The studies of this new method, called basket studies because they lump together different kinds of cancer, are revolutionary, much smaller than the usual studies, and without control groups of patients who for comparison's sake receive standard treatment.
More ...
Wednesday, February 25, 2015
Shire, Maker of Binge-Eating Drug Vyvanse, First Marketed the Disease - NYTimes.com
The retired tennis player Monica Seles spent this month making the rounds of television talk shows, appearing on everything from "Good Morning America" to "The Dr. Oz Show" to share her personal struggle with binge eating.
"It took a while until I felt comfortable talking about it," she said in a People magazine interview, explaining that she secretly devoured food for years while she was a professional athlete. "That's one of the reasons I decided to do this campaign: to raise awareness that binge eating is a real medical condition."
But that is not the only reason. Ms. Seles is a paid spokeswoman for Shire, which late last month won approval to market its top-selling drug, Vyvanse, to treat binge-eating disorder, a condition that once existed in the shadow of better-known disorders like anorexia and bulimia but was officially recognized as its own disorder in 2013 by the American Psychiatric Association.
As Shire introduces an ambitious campaign to promote Vyvanse but also to raise awareness about the disorder, some are saying the company is going too far to market a drug, a type of amphetamine, that is classified by the federal government as having a high potential for abuse. Shire's track record is adding to the worry: The company helped put another once-stigmatized condition — attention deficit hyperactivity disorder — on the medical map and made billions of dollars from the sale of drugs, like Vyvanse and Adderall, to treat it. In recent years, federal officials have cited the company for inappropriately marketing Vyvanse and other A.D.H.D. drugs.
More ...
http://www.nytimes.com/2015/02/25/business/shire-maker-of-binge-eating-drug-vyvanse-first-marketed-the-disease.html?
"It took a while until I felt comfortable talking about it," she said in a People magazine interview, explaining that she secretly devoured food for years while she was a professional athlete. "That's one of the reasons I decided to do this campaign: to raise awareness that binge eating is a real medical condition."
But that is not the only reason. Ms. Seles is a paid spokeswoman for Shire, which late last month won approval to market its top-selling drug, Vyvanse, to treat binge-eating disorder, a condition that once existed in the shadow of better-known disorders like anorexia and bulimia but was officially recognized as its own disorder in 2013 by the American Psychiatric Association.
As Shire introduces an ambitious campaign to promote Vyvanse but also to raise awareness about the disorder, some are saying the company is going too far to market a drug, a type of amphetamine, that is classified by the federal government as having a high potential for abuse. Shire's track record is adding to the worry: The company helped put another once-stigmatized condition — attention deficit hyperactivity disorder — on the medical map and made billions of dollars from the sale of drugs, like Vyvanse and Adderall, to treat it. In recent years, federal officials have cited the company for inappropriately marketing Vyvanse and other A.D.H.D. drugs.
More ...
http://www.nytimes.com/2015/02/25/business/shire-maker-of-binge-eating-drug-vyvanse-first-marketed-the-disease.html?
‘The Good Doctor’: A Son’s Look at an Earlier Generation - NYTimes.com
In a career that spanned more than five decades, from the 1950s into the 21st century, Dr. Phillip I. Lerner witnessed vast transformations in medicine. But as his son, Dr. Barron H. Lerner, writes in this exquisitely insightful new memoir, none of the changes was more profound than the evolution of the doctor-patient relationship.
The son revered the father, viewing him as a model of solicitude and benevolence, unconditionally devoted to his patients. Yet when he got the chance to review his father's journals, going back to 1961, he realized that the older man's ethical compass differed drastically from his own.
Phillip Lerner, the son of a Polish immigrant, came of age in an era when the doctor (almost always male) was king — the best and final arbiter in all medical matters. Patients could be patronized and even lied to, and the doctor could take it upon himself to accelerate the death of a terminally ill patient whom he deemed to be suffering excessively.
As late as 1996, the younger Dr. Lerner writes, his father placed himself over the body of a pulseless woman to prevent colleagues from trying to resuscitate her. And when his own elderly relatives became sick, Phillip Lerner saw little wrong in directing their care.
Today "patient autonomy" has become the norm, and the younger Dr. Lerner is a fervent advocate of it. Modern ethical standards make caring for family members "an absolute taboo," he writes, since lack of objectivity increases the likelihood of questionable decisions.
More ...
http://www.nytimes.com/2014/06/17/health/the-good-doctor-a-sons-look-at-an-earlier-generation.html?
The son revered the father, viewing him as a model of solicitude and benevolence, unconditionally devoted to his patients. Yet when he got the chance to review his father's journals, going back to 1961, he realized that the older man's ethical compass differed drastically from his own.
Phillip Lerner, the son of a Polish immigrant, came of age in an era when the doctor (almost always male) was king — the best and final arbiter in all medical matters. Patients could be patronized and even lied to, and the doctor could take it upon himself to accelerate the death of a terminally ill patient whom he deemed to be suffering excessively.
As late as 1996, the younger Dr. Lerner writes, his father placed himself over the body of a pulseless woman to prevent colleagues from trying to resuscitate her. And when his own elderly relatives became sick, Phillip Lerner saw little wrong in directing their care.
Today "patient autonomy" has become the norm, and the younger Dr. Lerner is a fervent advocate of it. Modern ethical standards make caring for family members "an absolute taboo," he writes, since lack of objectivity increases the likelihood of questionable decisions.
More ...
http://www.nytimes.com/2014/06/17/health/the-good-doctor-a-sons-look-at-an-earlier-generation.html?
Chronic Fatigue Syndrome Needs Effective Treatments - NYTimes.com
Too often, doctors don't understand chronic fatigue syndrome. They don't know how to diagnose it, and they frequently even believe that patients with the disease are just whining or suffering from psychological problems. This needs to change.
That was the message from the Institute of Medicine's recent report on the illness, which proposed new criteria to diagnose it and recommended ditching the syndrome's confusing and demeaning name. The proposed alternative: systemic exertion intolerance disease, or S.E.I.D.
As a patient for 16 years, I've dealt with plenty of doctors who were ignorant about the disease. So my questions were: Will this work? Is a report from one of the most prestigious bodies in American medicine, an arm of the National Academy of Sciences, enough to make doctors take the disease seriously? Will patients get diagnoses faster and be treated more effectively?
Early indications are discouraging. An article about the report on Medscape, a website for doctors, received 273 comments as of Tuesday, and most were dismissive. Here are a few examples:
• "Absent hard biological evidence, Chronic Fatigue Syndrome might" count "lots of people as 'Sick' who are in monotonous jobs, bad marriages, or plain bored with life."
• "great, disability here I come! glad I got that plan a long time ago."
• "Chronic fatigue and fibromyalgia — two wastebasket diagnoses in search of pathology."
The nearly 300-page report explicitly argued against these sentiments with a thorough review of the scientific literature. It pointed out that chronic fatigue (the condition of being tired all the time) and chronic fatigue syndrome (an illness in which exhaustion is just one of many debilitating symptoms) are very different.
More ...
Professor's reflections on his battle with depression touch many at recent disciplinary meeting @insidehighered
It's not every day that respected academics reveal their personal struggles, especially to a big audience of colleagues and strangers. So a recent talk by Peter Railton, the Gregory S. Kavka Distinguished University Professor and Arthur F. Thurnau Professor of philosophy at the University of Michigan, is making the rounds on social media -- along with accounts of multiple standing ovations and even open weeping from some of those present. Railton's topic? His battle with depression, which he says he's hidden for too long.
"As academics, we live in its midst," Railton said, according to a draft of the John Dewey Lecture he delivered last week at the annual meeting of the American Philosophical Association's Central Division in St. Louis. "We know how it hurts our students, our colleagues, our teachers, our families. Of course, most of us are 'educated' about depression -- we like to think that we no longer consider it a stain on one's character. We've gotten beyond that. Or have we?"
In the same way that don't ask, don't tell policies implied that being gay was something shameful to be kept private, Railton said, the social codes surrounding mental illness prevent many who need help from seeking it. He encouraged those who have struggled with depression and related conditions, such as anxiety, to come out and share their experiences, rather than conceal them for fear of judgment.
"Some already have, but far too few adult men (big surprise!), and especially far too few of the adult men who have somehow managed to bear the stamp of respectability and recognition, and thus are visible to hundreds of students and colleagues," he said. "Perhaps if enough of us, of all ages and walks of life, parents, children, brothers, coworkers, spouses, relatives, deans and directors, tinkers, tailors, soldiers, sailors, can be open about our passages through mental illness, a shadowy stigma will fade away into the broad light of day."
Likewise, Railton advised those who suspect friends or colleagues are suffering to inquire as to their wellness, especially by sharing any of their own experiences with mental health issues. Reflecting on his own major depressive episodes throughout his life, he said, "I couldn't say it. I couldn't say, 'Look, I'm dying inside. I need help.' Because that's what depression is -- it isn't sadness or moodiness, it is above all a logic that undermines from within, that brings to bear all the mind's mighty resources in convincing you that you're worthless, incapable, unlovable, and everyone would be better off without you."
Railton continued, "I know what has held me back all these years. Would people think less of me? Would I seem to be tainted, reduced in their eyes, someone with an inner failing whom no one would want to hire or with whom no one would want to marry or have children? Would even friends start tiptoeing around my psyche? Would colleagues trust me with responsibility?
More ...
https://www.insidehighered.com/news/2015/02/25/professors-reflections-his-battle-depression-touch-many-recent-disciplinary-meeting
"As academics, we live in its midst," Railton said, according to a draft of the John Dewey Lecture he delivered last week at the annual meeting of the American Philosophical Association's Central Division in St. Louis. "We know how it hurts our students, our colleagues, our teachers, our families. Of course, most of us are 'educated' about depression -- we like to think that we no longer consider it a stain on one's character. We've gotten beyond that. Or have we?"
In the same way that don't ask, don't tell policies implied that being gay was something shameful to be kept private, Railton said, the social codes surrounding mental illness prevent many who need help from seeking it. He encouraged those who have struggled with depression and related conditions, such as anxiety, to come out and share their experiences, rather than conceal them for fear of judgment.
"Some already have, but far too few adult men (big surprise!), and especially far too few of the adult men who have somehow managed to bear the stamp of respectability and recognition, and thus are visible to hundreds of students and colleagues," he said. "Perhaps if enough of us, of all ages and walks of life, parents, children, brothers, coworkers, spouses, relatives, deans and directors, tinkers, tailors, soldiers, sailors, can be open about our passages through mental illness, a shadowy stigma will fade away into the broad light of day."
Likewise, Railton advised those who suspect friends or colleagues are suffering to inquire as to their wellness, especially by sharing any of their own experiences with mental health issues. Reflecting on his own major depressive episodes throughout his life, he said, "I couldn't say it. I couldn't say, 'Look, I'm dying inside. I need help.' Because that's what depression is -- it isn't sadness or moodiness, it is above all a logic that undermines from within, that brings to bear all the mind's mighty resources in convincing you that you're worthless, incapable, unlovable, and everyone would be better off without you."
Railton continued, "I know what has held me back all these years. Would people think less of me? Would I seem to be tainted, reduced in their eyes, someone with an inner failing whom no one would want to hire or with whom no one would want to marry or have children? Would even friends start tiptoeing around my psyche? Would colleagues trust me with responsibility?
More ...
https://www.insidehighered.com/news/2015/02/25/professors-reflections-his-battle-depression-touch-many-recent-disciplinary-meeting
Tuesday, February 24, 2015
NYTimes: Please Stop Making That Noise
I can't stand it when someone behind me at a movie chews popcorn with his or her mouth open. I mean, I really can't stand it.
I have misophonia, a condition with which certain sounds can drive someone into a burst of rage or disgust. Although only identified and named in the last 20 years, misophonia has been enthusiastically embraced, with websites, Facebook pages and conferences drawing small armies of frustrated visitors.
As a primary care physician, I find that misophonia can present some special challenges: At times, my patients can be the source of annoying sounds. At other times, the condition can be a source of special bonding if I realize that a patient is a fellow sufferer.
But some experts question whether misophonia really exists. By naming it, are we giving too much credence to a series of symptoms that are no big deal?
Coined by the married researchers Margaret and Pawel Jastreboff of Emory University in 2002, misophonia ("hatred of sound") is sometimes referred to as selective sound sensitivity syndrome. Like me, those with the disorder identify a series of specific sounds that bother them. A 2013 study by Arjan Schröder and his colleagues at the University of Amsterdam identified the most common irritants as eating sounds, including lip smacking and swallowing; breathing sounds, such as nostril noises and sneezing; and hand sounds, such as typing and pen clicking.
The range of responses to these noises is broad, from irritation to disgust to anger. Some sufferers even respond with verbal or physical aggression to those making the noises. One woman reported wanting to strangle her boyfriend in response to his chewing.
Researchers are only beginning to understand the science behind misophonia, but early data suggest a hyperconnectivity between the auditory system and the limbic system, a part of the brain responsible for generating emotions. Some studies have found associations between misophonia and other psychiatric conditions, such as obsessive compulsive disorder and post-traumatic stress disorder, but many sufferers appear to have no other major emotional problems. Dr. Schröder and other researchers are developing specific diagnostic criteria.
Like most people with misophonia, I had symptoms long before I had heard of the condition. When I lived in New York City, I was much more sensitive than my roommates to noises from adjacent apartments. When dogs are left outside barking late at night, I fixate on the noise and cannot fall asleep. Chewing noises, particularly from behind me, are enormously irritating, as are people who perpetually sniff their mucus back into their nostrils rather than blowing their noses and ending the noise. Fortunately, I have not — at least so far — experienced nearly the rage of some of my fellow sufferers.
More ...
http://well.blogs.nytimes.com/2015/02/23/please-stop-making-that-noise/?
I have misophonia, a condition with which certain sounds can drive someone into a burst of rage or disgust. Although only identified and named in the last 20 years, misophonia has been enthusiastically embraced, with websites, Facebook pages and conferences drawing small armies of frustrated visitors.
As a primary care physician, I find that misophonia can present some special challenges: At times, my patients can be the source of annoying sounds. At other times, the condition can be a source of special bonding if I realize that a patient is a fellow sufferer.
But some experts question whether misophonia really exists. By naming it, are we giving too much credence to a series of symptoms that are no big deal?
Coined by the married researchers Margaret and Pawel Jastreboff of Emory University in 2002, misophonia ("hatred of sound") is sometimes referred to as selective sound sensitivity syndrome. Like me, those with the disorder identify a series of specific sounds that bother them. A 2013 study by Arjan Schröder and his colleagues at the University of Amsterdam identified the most common irritants as eating sounds, including lip smacking and swallowing; breathing sounds, such as nostril noises and sneezing; and hand sounds, such as typing and pen clicking.
The range of responses to these noises is broad, from irritation to disgust to anger. Some sufferers even respond with verbal or physical aggression to those making the noises. One woman reported wanting to strangle her boyfriend in response to his chewing.
Researchers are only beginning to understand the science behind misophonia, but early data suggest a hyperconnectivity between the auditory system and the limbic system, a part of the brain responsible for generating emotions. Some studies have found associations between misophonia and other psychiatric conditions, such as obsessive compulsive disorder and post-traumatic stress disorder, but many sufferers appear to have no other major emotional problems. Dr. Schröder and other researchers are developing specific diagnostic criteria.
Like most people with misophonia, I had symptoms long before I had heard of the condition. When I lived in New York City, I was much more sensitive than my roommates to noises from adjacent apartments. When dogs are left outside barking late at night, I fixate on the noise and cannot fall asleep. Chewing noises, particularly from behind me, are enormously irritating, as are people who perpetually sniff their mucus back into their nostrils rather than blowing their noses and ending the noise. Fortunately, I have not — at least so far — experienced nearly the rage of some of my fellow sufferers.
More ...
http://well.blogs.nytimes.com/2015/02/23/please-stop-making-that-noise/?
How to Develop New Antibiotics - NYTimes.com
The bacteria are winning.
Every year, according to the Centers for Disease Control and Prevention, at least two million people are infected with bacteria that can't be wiped out with antibiotics, and as a result, 23,000 people die. Direct health care costs from these illnesses are estimated to be as high as $20 billion annually.
Just last week, the U.C.L.A. Health System announced that nearly 180 patients may have been exposed to the CRE superbug that was linked to two deaths in one of its hospitals. Today, 30 percent of severe strep pneumonia infections are resistant to multiple drugs and 30 percent of gonorrheainfections are resistant to all antibiotics. And drug-resistant enterobacteriaceae, enterococcus, acinetobacter and a slew of other unpronounceable bacteria pose serious threats.
The development of antibiotics has been glacial. We need a completely new approach.
More ...
Monday, February 23, 2015
Everything I know about a good death I learned from my cat | The Verge
My cat has been dying for the last two years. It is normal to me now — it is simply the state of affairs. There's a rhythm to her medication: prednisone and urosodiol in the morning, urosodiol again in the evening, chemo every other day, a vitamin B shot once a week. And now, toward the end, painkillers. Over these last two years, I've come to suspect that my cat has gotten better, more comprehensive planning around her eventual death than most people do.
Dorothy Parker — Dottie, to her friends — is a cat I adopted in Brooklyn from a local vet; she made the cross-country hop with me to Oakland with minimal fuss. Her attitude, most of the time, is that of a 14-year-old Marxist in a Che Guevara T-shirt. One of her favorite moods is murder. She likes cuddling, hates strangers, and goes crazy for ice cream. She steals cheese. I live with a tiny, vicious alien, and I love her.
More ...
http://www.theverge.com/2015/2/23/8069825/everything-i-know-about-a-good-death-i-learned-from-my-cat
Sunday, February 22, 2015
Transparency about medical errors a ‘magic bullet’ that could help make heath care safer: report | National Post
Improving transparency around medical error is a potential "magic bullet" that could finally start to make health care less hazardous after years of lacklustre efforts, concludes a new report from a major American patient-safety organization.
Increasing openness would bring "powerful effects" and cost relatively little to implement, the National Patient Safety Foundation report argues.
Among the institute's 39 recommendations is for health care institutions to create a culture where transparency is rewarded and failing to speak up brings "consequences"; informing all patients about their clinician's experience, outcomes and disciplinary history; and requiring that hospitals and other facilities publicly report on their performance.
"If transparency were a drug, it would likely be a blockbuster, given the evidence of its effectiveness and its enthusiastic endorsements from key stakeholders," said the organization. "How can patients fully trust the clinicians and organizations from which they receive care if these clinicians and organizations are not fully transparent?"
The report from the foundation's Lucian Leape Institute was released this week, as a National Post series revealed that most of the thousands of cases of serious medical error estimated to occur in Canadian hospitals every year go unreported even within the facilities. And less information about those mishaps is divulged publicly.
Four provinces release no data at all, most of the rest provide only limited statistics. Manitoba alone releases any detail — in the form of terse, one-line descriptions — on specific incidents.
More ...
http://news.nationalpost.com/2015/01/22/transparency-about-medical-errors-a-magic-bullet-that-could-help-make-heath-care-safer-report/#__federated=1
Increasing openness would bring "powerful effects" and cost relatively little to implement, the National Patient Safety Foundation report argues.
Among the institute's 39 recommendations is for health care institutions to create a culture where transparency is rewarded and failing to speak up brings "consequences"; informing all patients about their clinician's experience, outcomes and disciplinary history; and requiring that hospitals and other facilities publicly report on their performance.
"If transparency were a drug, it would likely be a blockbuster, given the evidence of its effectiveness and its enthusiastic endorsements from key stakeholders," said the organization. "How can patients fully trust the clinicians and organizations from which they receive care if these clinicians and organizations are not fully transparent?"
The report from the foundation's Lucian Leape Institute was released this week, as a National Post series revealed that most of the thousands of cases of serious medical error estimated to occur in Canadian hospitals every year go unreported even within the facilities. And less information about those mishaps is divulged publicly.
Four provinces release no data at all, most of the rest provide only limited statistics. Manitoba alone releases any detail — in the form of terse, one-line descriptions — on specific incidents.
More ...
http://news.nationalpost.com/2015/01/22/transparency-about-medical-errors-a-magic-bullet-that-could-help-make-heath-care-safer-report/#__federated=1
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