Hurt All Over - Diagnosis - Dr. Lisa Sanders - NYTimes.com

'Will you please see my sister?' the young woman asked Dr. David Podell, who was a friend of a friend and had a reputation as a kinder version of TV's Dr. Gregory House. People told her that Podell was a doctor who specialized in diagnosing odd diseases, and she hoped he might finally solve the puzzle of her older sister's mysterious illness.

1. THE PATIENT'S STORY

Over the past 10 years, the patient — now 33 — became completely disabled by strange pains and odd episodes of weakness that no one could explain. The sister handed Podell a letter from the patient. "I am very desperate for help," she wrote, "and I am struggling every day all day without relief. I have heard you are the best, and if there is help out there, you are the one who will find it. . . . Please give me back my future."

Podell wasn't sure he could help but wanted to try. The patient, however, lived in Ohio, and Podell was in Middlebury, Conn. If she were going to travel, Podell told the sister, he wanted to make sure that he could do something for her. He would need copies of her medical records and recent test results, and he would need to talk with her before he saw her.

That weekend, Podell called the woman. Her voice was soft and high-pitched and sounded younger than her 33 years. She told him that her whole life had been one of near-constant pain. It became unbearable when she was pregnant and developed crippling back pain. Now, seven years after her daughter was born, her entire body ached almost all the time.

2. SYMPTOMS

Her joints hurt, she told him. So did her muscles, even her skin. She was tired yet couldn't sleep. She had frequent migraine headaches. She had irritable bowel syndrome. She was severely depressed. She had fibromyalgia, anemia, endometriosis.

Recently she had episodes during which she would lose her strength on one side of her body. The first time it happened, it was just her left arm. She went to the emergency room, where a doctor was worried that she'd had a stroke. But a CT scan of her head was normal. Her strength returned within days. She had seen so many doctors, and no one knew what was wrong. Her voice broke on the phone. He could hear her sobbing quietly.

3. THE DOCTOR'S STORY

Podell is a rheumatologist — a specialist in diseases of the tissues that hold the body together — bones, muscles, tendons. He sees a lot of people who have pain all over their bodies. But he was worried about seeing this patient. "She'd put all her eggs in my basket," he told me. "And I didn't want to drop it." So in addition to having her doctor send him all the studies she had so far, he wanted her to get other tests — lots of tests. He was determined not to miss this diagnosis. "I went for the zebras," he said, meaning rare diseases, "because frankly, after all the doctors she's seen, I was pretty sure all the horses had already been looked at."

4. POSSIBLE DIAGNOSIS

Podell has a list of unusual diseases that he considers in patients who have this kind of diffuse pain. The list includes hepatitis B and C; Lyme disease; Sjogren's syndrome (which affects the glands that produce tears and saliva); lupus and other diseases of the connective tissues; H.I.V.; thyroid disease; celiac disease (which affects the digestive system and is triggered by foods containing gluten).

5. TEST RESULTS

The patient's doctor in Ohio sent records from the past two years. The patient had seen two pain specialists, a gastroenterologist and an allergist. She had been scoped, X-rayed and CT scanned. She'd been stuck for blood and pricked for allergies. Most of the tests were unrevealing. But two stood out: in 2009, two blood tests were performed for celiac disease, and both were positive.

Then results from tests that Podell ordered started to arrive. As before, most were unrevealing, with the sole exception of those testing for celiac disease, which were strongly positive. Podell was excited, but a blood test is not a diagnosis, he knew. False positives are not unusual, so generally a biopsy of the small intestine is recommended. The patient hadn't had one. In addition, the patient saw a gastroenterologist earlier that year, and he didn't even mention celiac in his note. Had it already been ruled out somehow?

6. THE EXAM

Three weeks after they spoke on the phone, the patient came to Podell's office, accompanied by her mother and the sister who had made the arrangements. As they exchanged pleasantries, Podell quietly began his examination. The first thing he noticed was that the patient was much smaller than her sister and mother. She was only 4-foot-9. Otherwise she looked well. He listened carefully as the three women told him about the woman's years of pain.

7. RESEARCH

While the patient undressed for the physical, Podell hurried to his office to read up on the ways celiac disease affects the body. He knew that short stature, abdominal pain and diarrhea were associated with the disease. What else? The list he found was long: neuropathic pain, headaches, psychiatric disorders, iron deficiency, vitamin D deficiency — she had all of these.

Podell examined the woman, and she was extremely tender; everywhere he touched was painful — especially her muscles and skin.

Podell then asked what might have been his most important question: Had she ever tried a gluten-free diet? If she had but hadn't improved, that would make celiac disease very unlikely. The patient said she had tried the diet. After the positive test two years earlier, she gave up pasta and bread for a month or so. But she didn't feel any better, so her doctor said to forget it. Podell smiled. She hadn't really been on a gluten-free diet. Even small amounts of gluten in, say, cereal or baked goods would make her sick. This was celiac disease. He would bet on it.

8. CELIAC DISEASE

Celiac is an inherited disease of the small intestine that causes abdominal pain, diarrhea and an inability to absorb nutrients. When affected individuals are exposed to gluten — a very common protein found in cereals and grains — they develop antibodies that attack the lining of the small intestine. Once the absorptive lining is injured, the small intestine can't do its job of taking up nutrients from food. The undigested foods go on to cause abdominal pain, bloating and diarrhea. This patient had some of these digestive symptoms, but mostly she had pain — nerve pain, muscle pain, headaches, depression. These are also seen in patients with celiac disease. What causes these other symptoms isn't known.

9. TREATMENT

Podell sent the patient to a nutritionist to learn the fundamentals of the celiac diet. She has been disciplined about eating gluten-free for nearly three months. She has more energy and less pain, and she's back at work — not quite full time, but she's getting there.

I asked Podell why the patient did so much better this time than she did two years ago, when celiac was suggested as a possibility. He said that maybe her doctors didn't really think she had celiac, and so she didn't think she had it either. "I was very enthusiastic about this diagnosis. And I thought she really had it. So maybe it was the nonscientific component — the salesmanship — that made her try and stay with it."

This case is a reminder of an important precept in medicine: a diagnosis isn't really final until it is embraced by both the patient and the doctor. That's the real art of diagnosis and an essential part of the cure.

http://www.nytimes.com/2011/11/13/magazine/diagnosis-hurt-all-over.html?pagewanted=all

Our High-Tech Health-Care Future - NYTimes.com

Why can't Americans tap into the ingenuity that put men on the moon, created the Internet and sequenced the human genome to revitalize our economy?

I'm convinced we can. We are in the early phases of the next big technology-driven revolution, which I call "consumer health." When fully unleashed, it could radically cut health care costs and become a huge global growth market.

Over the past few years, innovations like electronic health records and the use of mobile computing devices in hospitals have begun to improve medical care delivery. Consumer health information Web sites and online disease support groups have made millions of people active participants in their own health care.

But imagine a far more extreme transformation, in which advances in information technology, biology and engineering allow us to move much of health care out of hospitals, clinics and doctors' offices, and into our everyday lives.

Here's a picture — inspired by ideas and innovations emerging from university research labs, clinical innovation centers, start-ups and large companies — of how it could work.

It would begin with a "digital nervous system": inconspicuous wireless sensors worn on your body and placed in your home would continuously monitor your vital signs and track the daily activities that affect your health, counting the number of steps you take and the quantity and quality of food you eat. Wristbands would measure your levels of arousal, attention and anxiety. Bandages would monitor cuts for infection. Your bathroom mirror would calculate your heart rate, blood pressure and oxygen level.

Then you'd get automated advice. Software that could analyze and visually represent this data would enable you to truly understand the impact of your behavior on your health and suggest changes to help prevent illness — by far the most effective way to cut health care costs.

Many situations would still call for professional medical attention, of course, but in most cases you wouldn't need to make a costly trip to the doctor's office. If you were not feeling well, a lifelike avatar on your smart phone would use natural-language processing to listen as you described your symptoms and then would translate them into medical jargon. After consulting a diagnostic supercomputer, the avatar would ask you to run a few quick medical tests at home.

You might slip a low-cost plastic attachment over your phone display, look into its eyepiece and conduct a cataract exam. The avatar would transmit the results to your human doctor, who would send you a video message explaining the diagnosis and prescribing treatment.

When you did need an office visit, you and your doctor would sit side by side in front of a large touch screen that would display a conceptual animation of what was going on inside your body. Decisions like choice of medication and dosing schedules would be made collaboratively with your doctor, and treatment regimens would be synchronized to apps on your phone that would make the task of following doctor's orders — all too often neglected — easy and even fun. (I am an adviser to some early stage start-ups developing technologies like these.)

The United States should commit to a "moon shot" for consumer health to make this imagined world a reality. In addition to the health benefits, we would gain revenue from exports of consumer health products to countries like China and India, which are likely to become enormous health care markets. And the savings in health care costs could easily amount to a trillion dollars annually, as those costs are now about 18 percent of gross domestic product but could be brought closer in line with the 10 percent typical of modern developed nations.

I acknowledge that this goal is very optimistic, given the paternalism of the medical profession, the poor health habits of most Americans and the perverse incentives of our health care system.

But the burgeoning consumer health revolution has a powerful force on its side — American creativity. There is a rapidly growing network of inventors, academics and entrepreneurs who share a passion for empowering individuals to take control of their health. There is even a spirited health data movement, known as the Quantified Self, that is reminiscent of the Homebrew Computer Club, whose members helped spawn Apple and other companies in the early days of the personal computing revolution.

There's also private sector money beginning to flow. Venture capitalists are ramping up their investments in health-tech start-ups. The X Prize Foundation is co-sponsoring a $10 million award for the best mobile device allowing consumers to diagnose their own diseases.

For its part, all the government has to do is to catalyze this revolution. One step in the right direction is Healthdata.gov, a free resource of public health data and tools that can help innovators quickly bring to market data-driven applications and services. A bigger step would be for Congress to pass a bill that would orchestrate the development of interoperability and privacy standards for consumer health products and actively promote the industry at home and abroad.

Recent history has shown that when the right cultural, technical and economic forces converge, people can transform fundamental aspects of society from the bottom up in a way that seemed impossible just a short time before. I believe that such a time is coming for health care.

Frank Moss, an entrepreneur and former director of the M.I.T. Media Lab, is the author of "The Sorcerers and Their Apprentices: How the Digital Magicians of the M.I.T. Media Lab Are Creating the Innovative Technologies That Will Transform Our Lives."

http://www.nytimes.com/2011/11/10/opinion/our-high-tech-health-care-future.html?

Dr. Smartphone: How medical apps are changing diagnoses and treatments | National Post (Dr. James Aw)

Recently, one of my patients, who I'll call Nima, told me about the app for the iPhone and iPad called Proloquo2go. It's a fascinating little bit of software designed for people who have trouble with verbal communication — such as stroke patients, or, in the case of Nima's daughter, those who have autism. It works like this: The user points at little pictographs that represent various words — a pictograph represents "I," another for "want" and then a glass filled with white liquid might stand for "milk." Then the program speaks the words out loud. In this way, Proloquo2go allows Nima's daughter to communicate a drink preference in a restaurant — or any number of other desires. Nima says it's been a godsend for her family, and a recent 60 Minutes feature on the software indicates other families feel the same way.

"This is the first thing that's helped," Nima says. "Before, my daughter had trouble communicating with her family. Now, we're getting to the point that she's able to communicate with anyone. Her world is wide open."

We're accustomed to thinking of apps as novelty items — small bits of convenience that, overall, affect our lives only incrementally. But Proloquo2go is just one health app among many that are transforming the way people live with medical conditions — and how doctors treat them.

The Canadian-made "Bant" is an example that falls firmly into the first category — an app that empowers patients.

Created by the Centre for Global eHealth Innovation at Toronto's University Health Network, the program is intended to be used by Type-1 diabetics, who should check and log their blood glucose levels four times throughout the day. Bant users prick themselves with small electronic devices called glucometers, which then communicate wirelessly with the Bant software so it can flag troubling blood sugar trends that may indicate users need to adjust an upcoming insulin dose. Intended for teens who can be apt to forget their testing, Bant was credited with users conducting about 50% more monitoring in a clinical trial — possibly because participating teens who logged their tests were rewarded with credits at the iTunes store.

Bant's name, of course, refers to Sir Frederick Banting, one of the great researchers in medicine and one of the Canadian doctors who helped to discover insulin. And the success of the University Health Network software suggests health apps may be just as transformative for their users as insulin was for diabetics. Perhaps one day soon, we'll all carry around software that monitors many different facets of our health. What if a smartphone could sense an abnormal heart rate and changes in blood pressure? Maybe an app could then recognize the signs of a heart attack, and contact 911.

Then there are the apps designed to make things easier for physicians. Early in my career, it was common for my medical peers to keep stacks of index cards in the pockets of their white lab coats. Not sure of the exact dose of medication for a 130-pound, 31-year-old woman with kidney disease? Just consult the index card for the formula, and perform the calculation. These days, though, such smartphone apps as Epocrates, Medscape or Micromedex provide a whole host of reference tools, each of them accessible via a smartphone in a pocket. These types of apps allow clinicians to access breaking medical news, clinical guidelines, drug dosing and medical calculators.

As a manager of doctors, as well as a practising physician myself, I'm intrigued by the possibility that these apps could usher in a new age of more efficient medicine. Take the new voice-recognition software that comes with some of the leading smartphones on the market. You can ask Siri on the iPhone 4S, "Will it snow this weekend?" and it'll show you the weather forecast. It's conceivable we'll soon be able to recite our symptoms to a doctor app, which then provides a diagnosis, as well as a prescription.

Could smartphones take the place of general practitioners? I recently read an article on the New England Journal of Medicine's website that mentioned the various errors to which human doctors are susceptible: everything from confirmation bias to "anchoring," a term that means placing too much importance on one element of a medical narrative. Would new and more sophisticated diagnostic apps eliminate these sorts of human errors?

Maybe for the easy stuff. But as I consider our science-fiction present, I can't escape a quote I came across in medical school from the legendary Canadian doctor William Osler: "As no two faces are the same, so no two bodies are alike, and no two individuals react alike and behave alike under the abnormal conditions which we know as disease."

In other words, every malady presents itself differently. For that reason I can't help but believe that plain old physician intuition will always be an important component of the process that leads from a messy set of symptoms to an accurate diagnosis and treatment. Great physicians treat individual patients, not numbers.

I'm excited about the potential of new health apps like Bant and Proloquo2go. Tools that improve doctor patient communication and empower patients are fantastic. But I'm a little wary of the robo-doc reference programs that are bringing us to a Star Trek-like present. Machines help, but humans think. The most valuable tools for any doctor are education, clinical experience and good old rational human judgment.

http://life.nationalpost.com/2011/11/08/paging-dr-smartphone-how-medical-apps-are-changing-diagnoses-and-treatments/

E-Cigarettes Help Smokers Quit, but They Have Some Unlikely Critics - NYTimes.com

If you want a truly frustrating job in public health, try getting people to stop smoking. Even when researchers combine counseling and encouragement with nicotine patches and gum, few smokers quit.

Recently, though, experimenters in Italy had more success by doing less. A team led by Riccardo Polosa of the University of Catania recruited 40 hard-core smokers — ones who had turned down a free spot in a smoking-cessation program — and simply gave them a gadget already available in stores for $50. This electronic cigarette, or e-cigarette, contains a small reservoir of liquid nicotine solution that is vaporized to form an aerosol mist.

The user "vapes," or puffs on the vapor, to get a hit of the addictive nicotine (and the familiar sensation of bringing a cigarette to one's mouth) without the noxious substances found in cigarette smoke.

After six months, more than half the subjects in Dr. Polosa's experiment had cut their regular cigarette consumption by at least 50 percent. Nearly a quarter had stopped altogether. Though this was just a small pilot study, the results fit with other encouraging evidence and bolster hopes that these e-cigarettes could be the most effective tool yet for reducing the global death toll from smoking.

But there's a powerful group working against this innovation — and it's not Big Tobacco. It's a coalition of government officials and antismoking groups who have been warning about the dangers of e-cigarettes and trying to ban their sale.

The controversy is part of a long-running philosophical debate about public health policy, but with an odd role reversal. In the past, conservatives have leaned toward "abstinence only" policies for dealing with problems liketeenage pregnancy and heroin addiction, while liberals have been open to "harm reduction" strategies like encouraging birth control and dispensing methadone.

When it comes to nicotine, though, the abstinence forces tend to be more liberal, including Democratic officials at the state and national level who have been trying to stop the sale of e-cigarettes and ban their use in smoke-free places. They've argued that smokers who want an alternative source of nicotine should use only thoroughly tested products like Nicorette gum and prescription patches — and use them only briefly, as a way to get off nicotine altogether.

The Food and Drug Administration tried to stop the sale of e-cigarettes by treating them as a "drug delivery device" that could not be marketed until its safety and efficacy could be demonstrated in clinical trials. The agency was backed by the American Cancer Society, the American Heart Association, Action on Smoking and Health, and the Center for Tobacco-Free Kids.

The prohibitionists lost that battle last year, when the F.D.A. was overruled in court, but they've continued the fight by publicizing the supposed perils of e-cigarettes. They argue that the devices, like smokeless tobacco, reduce the incentive for people to quit nicotine and could also be a "gateway" for young people and nonsmokers to become nicotine addicts. And they cite an F.D.A. warning that several chemicals in the vapor of e-cigarettes may be "harmful" and "toxic." But the agency has never presented evidence that the trace amounts actually cause any harm, and it has neglected to mention that similar traces of these chemicals have been found in other F.D.A.-approved products, including nicotine patches and gum. The agency's methodology and warnings have been lambasted in scientific journals by Dr. Polosa and other researchers, including Brad Rodu, a professor of medicine at the University of Louisville in Kentucky.

Writing in Harm Reduction Journal this year, Dr. Rodu concludes that the F.D.A.'s results "are highly unlikely to have any possible significance to users" because it detected chemicals at "about one million times lower concentrations than are conceivably related to human health." His conclusion is shared by Michael Siegel, a professor at the Boston University School of Public Health.

"It boggles my mind why there is a bias against e-cigarettes among antismoking groups," Dr. Siegel said. He added that it made no sense to fret about hypothetical risks from minuscule levels of several chemicals in e-cigarettes when the alternative is known to be deadly: cigarettes containing thousands of chemicals, including dozens of carcinogens and hundreds of toxins.

Both sides in the debate agree that e-cigarettes should be studied more thoroughly and subjected to tighter regulation, including quality-control standards and a ban on sales to minors. But the harm-reduction side, which includes the American Association of Public Health Physicians and the American Council on Science and Health, sees no reason to prevent adults from using e-cigarettes. In Britain, the Royal College of Physicians has denounced "irrational and immoral" regulations inhibiting the introduction of safer nicotine-delivery devices.

"Nicotine itself is not especially hazardous," the British medical society concluded in 2007. "If nicotine could be provided in a form that is acceptable and effective as a cigarette substitute, millions of lives could be saved."

The number of Americans trying e-cigarettes quadrupled from 2009 to 2010, according to the Centers for Disease Control. Its survey last year found that 1.2 percent of adults, or close to three million people, reported using them in the previous month.

"E-cigarettes could replace much or most of cigarette consumption in the U.S. in the next decade," said William T. Godshall, the executive director of Smokefree Pennsylvania. His group has previously campaigned for higher cigarette taxes, smoke-free public places and graphic warnings on cigarette packs, but he now finds himself at odds with many of his former allies over the question of e-cigarettes.

"There is no evidence that e-cigarettes have ever harmed anyone, or that youths or nonsmokers have begun using the products," Mr. Godshall said. On a scale of harm from 1 to 100, where nicotine gums and lozenges are 1 and cigarettes are 100, he estimated that e-cigarettes are no higher than 2.

If millions of people switch from smoking to vaping, it would be a challenge to conventional wisdom about the antismoking movement. The decline in smoking is commonly attributed to paternalistic and prohibitionist social policies, and it's ritually invoked as a justification for crackdowns on other products — trans fats, salt, soft drinks, Quarter Pounders.

But the sharpest decline in smoking rates in the United States occurred in the decades before 1990, when public health experts concentrated on simply educating people about the risks. The decline has been slower the past two decades despite increasingly elaborate smoking-cessation programs and increasingly coercive tactics: punitive taxes; limits on marketing and advertising; smoking bans in offices, restaurants and just about every other kind of public space.

Some 50 million Americans continue to smoke, and it's not because they're too stupid to realize it's dangerous. They go on smoking in part because of a fact that the prohibitionists are loath to recognize: Nicotine is a drug with benefits. It has been linked by researchers (and smokers) to reduced anxiety and stress, lower weight, faster reaction time and improved concentration.

"It's time to be honest with the 50 million Americans, and hundreds of millions around the world, who use tobacco," Dr. Rodu writes. "The benefits they get from tobacco are very real, not imaginary or just the periodic elimination of withdrawal.

"It's time to abandon the myth that tobacco is devoid of benefits, and to focus on how we can help smokers continue to derive those benefits with a safer delivery system."

As a former addict myself — I smoked long ago, and was hooked on Nicorette gum for a few years — I can appreciate why the prohibitionists fear nicotine's appeal. I agree that abstinence is the best policy. Yet it's obviously not working for lots of people. No one knows exactly what long-term benefits they'd gain from e-cigarettes, but we can say one thing with confidence: Every time they light up a tobacco cigarette, they'd be better off vaping.

http://www.nytimes.com/2011/11/08/science/e-cigarettes-help-smokers-quit-but-they-have-some-unlikely-critics.html?_r=1

‘Not ideal.’ - Being Sarah - Sarah Horton

I don't usually write 7,000 word long blog posts. Some things, though, require a lot to be said. This is about the NHS. And me.

Thursday 3 November 2011. My day starts at 6.30am. My days rarely start that early, me not being a morning person. But really my day starts at midnight, the last time I'm allowed to eat or drink before surgery, so we ate late that evening and then I had a chocolate mousse and ended with a drink of water at midnight.

I don't sleep particularly well. I've only had notice of this surgery two days ago. A cancellation, can I make it? Admissions ask me… to them it's a simple admin procedure, to fill up a booked and staffed operating theatre on Thursday.

To me, it's not quite that simple.

I generally try to write about patient experience – mine – using my point of view and my understanding of 'the other side'. Today I'm just going to write about mine.

To me, having surgery in two days' time is like cancelling my life from that point for several weeks – an unspecified time based on a recovery period estimated to be between two and four weeks.

To me it means that the longing for 'normal' and 'ordinary' that a cancer patient desires, will be interrupted. This is my fifth year post-diagnosis of breast cancer. Medically that's good. I'm still alive, well, NED. (No Evidence of Disease, not cured). But it's only this last summer that I have been able to describe my life as normal. Three years of intense treatment and six lots of surgery, culminating in DIEP breast reconstruction (ten hours in theatre, three months recovery, plus the added complication of an abdominal seroma), and revision six months later, both in 2009. And the following year, 2010, mostly in deep troughs of depression. Normal, apparently, say my medical team. A post trauma response.

This year, 2011, has been better, brighter. Finally I'm back to myself. I'm boxing, running, swimming, playing squash, learning the piano, enjoying new friendships (the better ones, the ones that lasted through cancer or the new post-cancer ones), I've spoken at a conference about patient information in the NHS,  I've been to New Jersey to visit my new blogging friend Rach, heck I've even been to Buckingham Palace in recognition of my advocacy work, speaking out as a patient, and my book was highly commended by the British Medical Association; so I've even been into the heart of the medical establishment where they describe my book – Being Sarah – as 'intelligent and well-written'. Not a bad year all round. But mostly it's normal and it's an active life. I'm enjoying it.

But surgery wrenches me and Ronnie out of all that and into hospital, recovery, dressings clinic appointments… an interruption.

But. But I want this surgery, this final (as far as we know), final part of breast reconstruction. I do want it. And when I saw my surgeon, Ken Graham, in the summer we discussed and agreed doing the surgery in November. It's just that I'd expected more than two days' notice.

And we planned it for now because I didn't want the interruption. I wasn't ready. I needed time to recover from the first attempt at this surgery. That was in April. Nipple reconstruction, but done with a local anaesthetic. The surgery that wasn't. I was too distressed.

Of course at the time, Ken Graham was mortified. He is such a good doctor, a kind man, a skilled surgeon, and his patients are his absolute priority. He hates to see them upset in any way.

But there I was sobbing on the operating table and Ken decided to stop before any scalpel incision had been made and I was so upset I couldn't walk back to the ward. So a wheelchair was sent for. The nurse from ward 3A turns up in the corridor outside theatre and finds me chatting with Ken and his team. She gives me a look. I've come to recognise this particular look, it's the one some nurses give you when they see you have a rapport with a doctor or surgeon, when you use their first name. But, you see, this is how I've got through these years of being Patient 475 089 3218. This is how I make my medical experience bearable. In fact, I really enjoy being with both my main doctors, but my over-riding wish in all of this, is that none of this ever happened. That I had the life I had before. That we prevent cancer.

But I digress. Back in the hospital corridor in April 2011 I am seated in the wheelchair, the nurse plonks my notes on my lap, the red file. And I am unceremoniously wheeled along the corridor, into the lift, back along another corridor and back to the bay where my bed is. The nurse leans over my shoulder, retreives the file, and waits, silently, while I stand up, and then sit on the chair next to my bed. Without looking at me she turns the wheelchair round and walks away.

She has not spoken to me. She does not say something sympathetic or reassuring. She does not say, 'Would you like a cup of tea?' Fortunately I am an experienced patient and have brought a flask of tea with me which I retrieve from my locker. Shortly after that my surgical team (without Ken who is with another patient) come and see me, now changed into their day clothes and initially I don't recognise them. The three of them stand in front of me and say sympathetic and apologetic words. I am completely demoralised by the whole experience and can't wait to get home as soon as possible.

More ...

http://beingsarahblog.wordpress.com/2011/11/06/not-ideal/

Self-tracking, Sensors, and mHealth: Trends and Opportunities - Kinetics blog, Dr. Carol E. Torgan

Do you weigh yourself regularly?  Do you make note of your  blood pressure or menstrual cycle? Do you note when your waist size or dress size changes? If so, you're a self-tracker.

Self-tracking is extremely widespread. In addition to all the organized tracking communities, there's a growing number of organic self-tracking communities. For examples, take a look at the diabetes made visible community on Flickr, or the more than 20,000 videos on YouTube tagged weight loss journey.

At the same time, sensor technology is advancing at an astounding pace. New materials and fabrication techniques, many at the nanoscale level, are leading to a host of amazing sensors that can be woven into clothes or permanently implanted into our bodies.

Mobile health (mHealth) offers the perfect platform to merge the tracking communities and sensor technologies. Toss in the power of social networking capabilities, and you've put the trifecta of instant 'track, share, and compare' at people's fingertips.

This presentation was given by invitation at the 2011 mHealth Networking Conference to review the current status of self-tracking and sensors, and to highlight just a few of the many exciting opportunities that lay ahead.

Resources cited in the presentation are listed below.

What do you track? What opportunities do you envision?

Communities, organizations

• 23andMe
• Asthmapolis
• Cure Together
• MedHelp
• PatientsLikeMe
• Quantified Self
• TuDiabetes
• Tweetwhatyoueat!

Tracking tools

• MedHelp – Health tools
• Personal Informatics – tools
• iTunes app store, popular apps, Healthcare & Fitness, Medical

Sensors

• BodyMedia
• cardiomems
• Fitbit
• IDEAL LIFE
• iHealth
• Polar
• Sleeptracker
• Under Armour
• Withings
• Zeo

Reports & publications

• Healthcare unwired: New business models delivering care anywhere. PricewaterhouseCoopers, September, 2010
• Peer-to-peer healthcare, Susannah Fox, Pew Internet, Feb 28, 2011
• Ingestible thermometer pill aids athletes in beating the heat, NASA Spinoff, 2006
• Innovations in health literacy research, workshop summary. Institute of Medicine, The National Academies Press, 2011
• Boomers, technology & health: Consumers taking charge! MIT Enterprise Forum Northwest, January, 2011 (pdf)
• 2008-2013 Action plan for the global strategy for the prevention and control of noncommunicable diseases, World Health Organization, 2009
• Yang , Yang-Li et al., Thick-film textile-based amperometric sensors and biosensors . Analyst, 135:1230-1234, 2010
• Abraham, WT, et al., Wireless pulmonary artery haemodynamic monitoring in chronic heart failure: a randomised controlled trial. The Lancet, 377:658-666, 2011
• Frost, J. et al., Patient-reported outcomes as a source of evidence in off-label prescribing: Analysis of data From PatientsLikeMe. Journal of Medical Internet Research, 13( 1), 2011
• Baicker, K. et al., Workplace wellness programs can generate savings, Health Affairs, 29(2): 304-311,2010

Miscellaneous

• Salt-o-meter, The Globe and Mail
• Finally: Self-tracking is cool enough for viral advertising. information aesthetics, Feb 15, 2011
• Push Snowboarding, Nokia x Burton

Related posts

• Self-tracking: Checking under the hood
• mHealth: Health where you live, work, and play
• mHealth Summit 2010: A context check list
• Utilizing mobile technology and new media to encourage mobile lifestyles

http://www.caroltorgan.com/self-tracking-sensors-mhealth/

Facebook -Like Portal Helps Teens with Crohn's Collaborate on Medical Research: Scientific American

Despite medical advances, the treatment of many chronic diseases remains haphazard and inconsistent. Teenagers with Crohn's disease, a painful digestive disorder often diagnosed in adolescence, for example, sometimes get conflicting information regarding medications, diet modifications and alternative therapies. To help improve the care these patients receive, a team of pediatricians and computer scientists is developing a new type of social network that turns doctors and patients into research collaborators.

Here is how it works: With each therapy or treatment modification, doctor and patient participate in a mini clinical trial. The patient records symptoms through daily reports, filed via text message or the Internet. The doctor uses that information to make immediate decisions. Should the dosage of medication be changed? Is the new diet helping to alleviate symptoms? And the data from those individual experiments are then deposited in a Web bank, where they can be aggregated with other patient data, from similar experiments, to further the understanding of the condition in question. In early tests of this process, doctors were able to increase the rate of remission from 55 to 78 percent without adding any new medications to their arsenal. "The idea is to make care continuous and to collect real-time data that will change our understanding and treatment of [Crohn's]," says Peter Margolis of Cincinnati Children's Hospital Medical Center, a co-founder of the new portal, the Collaborative Chronic Care Network.

The network, known as C3N, launched earlier this year at some 30 institutions around the country. For now it focuses on pediatric Crohn's, but it could grow to include other conditions, such as diabetes, heart disease, psoriasis and some cancers. The site's founders believe C3N will also provide a new platform for clinical research, one that is significantly less profit-driven. "Because large-scale clinical trials are so expensive, we only ever really test the treatments that promise a big payoff," says Ian Eslick, a Ph.D. candidate at the M.I.T. Media Lab and C3N's chief Web architect. "With C3N, we can scientifically test all the other things—probiotics, gluten-free diets, changes in iron intake—that people are already trying at home and that seem promising, even if they aren't profitable."

http://www.scientificamerican.com/article.cfm?id=social-medicine&print=true

Are Doctors Really to Blame for the ‘Overdose Epidemic’? | TIME Healthland

Forty people die each day from what Dr. Thomas Frieden, the director of the Centers for Disease Control and Prevention (CDC), calls an "epidemic" of prescription drug overdose. Frieden largely attributes the rise in overdose deaths, which have tripled since 1999, to overprescribing by doctors. But the reality is much more complicated.

At Tuesday's teleconference announcing the release of new CDC data on the problem, Frieden said, "In fact, now the burden of dangerous drugs is being created more by a few irresponsible doctors than by drug pushers on the street corners."

Such hyperbole is unlikely to lead to effective solutions for an extremely complex problem. Panics over addiction have always tended to focus relentlessly on supply, while failing to understand demand. In this case, unnecessary hysteria may also serve to reduce legitimate patients' access to needed pain treatment.

MORE: U.S. Aims to Reduce Overdose Deaths, But Will the New Plan Work?

Let's start with the facts: the vast majority of people who misuse prescription painkillers — 7 out of 10, according to drug czar Gil Kerlikowske — get them from family or friends, not directly from doctors. Secondly, most people addicted to these medications have used illegal drugs previously; they do not become addicted while being treated for pain.

A 2007 study of nearly 1,400 people addicted to OxyContin, who were treated at rehabs across the country, found that 78% had never been prescribed the drug themselves; the same percentage had been in rehab for a previous drug problem. Earlier data found that 80% of those addicted to OxyContin had previously used cocaine, a rate many times that seen in the general population.

That overlap is not likely to be attributed to pain patients who suddenly decide to try cocaine. The more probable explanation is that painkiller addiction is primarily affecting people with current or previous drug problems, not innocent patients being treated by pill-happy doctors.

Indeed, it is impossible for a doctor to "make someone" into an addict. Even if the doctor tied the person down and injected him or her daily with heroin or other strong opioids, only physical dependence could be created. That means the person would suffer withdrawal symptoms when the doctor stopped, but whether such victims genuinely became addicted would be determined by their own actions after that point.

MORE: Fueled by Growing Painkiller Use, Overdose Deaths and Child Poisonings Are on the Rise

If the research data is anything to go by, most people who use illegal drugs don't subsequently go looking for dealers or rob their grandmothers to get money to buy more. Of those who try heroin, more than 80% do not become junkies. Likewise, among adults who are legitimately prescribed opioid painkillers and who do not have past histories of drug problems, more than 97% don't develop new addictions.

Normal, healthy people given these drugs tend to find them unpleasantly numbing, not overwhelmingly attractive. Even among soldiers who served in Vietnam — 45% of whom tried opium or heroin while serving — just 1% developed ongoing heroin addictions that persisted after they came home.

Addiction doesn't just "happen": it requires people to choose repeatedly to use drugs to get high or to escape. By definition, this behavior must occur despite ongoing negative consequences; otherwise, it is not classified as addiction.

Moreover, although people with addiction often have genetic predispositions or exposures to traumatic experience that make drugs especially attractive to them, and although continued use itself can impair decision-making, they are not automatons with no free will. Their ability to choose not to take drugs may be reduced as they get hooked, but it's not eliminated: after all, no one shoots up in front of the cops.

MORE: Should an Overdose Antidote Be Made More Accessible?

The fact that addiction is not just about access to drugs is why talk of drug "epidemics" rarely changes their course. Supply-side efforts have had little effect on addiction rates. The exponential growth on such spending since Ronald Reagan declared war on drugs in the 1980s has no correlation whatsoever with rates of drug problems. The recent crackdown on prescription opioids began in the mid-2000s, with intense concern over OxyContin misuse — and yet overdose deaths continue to rise.

If we want to reduce opioid addiction, it might help to try to figure out why so many people feel the need to escape. And if we want to reduce opioid overdose, it might make sense to distribute the antidote, naloxone (Narcan), with prescriptions and make it available over the counter. Unlike efforts to restrict prescribing, this won't hamper appropriate pain care, and unlike rhetoric about epidemics and associated crackdowns on supply, there's actually a growing body of literature suggesting that Narcan saves lives.

Maia Szalavitz is a health writer at TIME.com. Find her on Twitter at @maiasz. You can also continue the discussion on TIME Healthland's Facebook page and on Twitter at @TIMEHealthland.

http://healthland.time.com/2011/11/02/are-doctors-really-to-blame-for-the-overdose-epidemic/print/