Thursday, January 17, 2013

'Survival of the wrongest' : Columbia Journalism Review

In late 2011, in a nearly 6,000-word article in The New York Times Magazine, health writer Tara Parker-Pope laid out the scientific evidence that maintaining weight loss is a nearly impossible task—something that, in the words of one obesity scientist she quotes, only "rare individuals" can accomplish. Parker-Pope cites a number of studies that reveal the various biological mechanisms that align against people who've lost weight, ensuring that the weight comes back. These findings, she notes, produce a consistent and compelling picture by "adding to a growing body of evidence that challenges conventional thinking about obesity, weight loss, and willpower. For years, the advice to the overweight and obese has been that we simply need to eat less and exercise more. While there is truth to this guidance, it fails to take into account that the human body continues to fight against weight loss long after dieting has stopped. This translates into a sobering reality: once we become fat, most of us, despite our best efforts, will probably stay fat."

But does this mean the obese should stop trying so hard to lose weight? Maybe. Parker-Pope makes sure to include the disclaimer that "nobody is saying" obese people should give up on weight loss, but after spending so much time explaining how the science "proves" it's a wasted effort, her assurance sounds a little hollow.

The article is crammed with detailed scientific evidence and quotes from highly credentialed researchers. It's also a compelling read, thanks to anecdotal accounts of the endless travails of would-be weight-losers, including Parker-Pope's own frustrating failures to remove and keep off the extra 60 pounds or so she says she carries.

In short, it's a well-reported, well-written, highly readable, and convincing piece of personal-health-science journalism that is careful to pin its claims to published research.

There's really just one problem with Parker-Pope's piece: Many, if not most, researchers and experts who work closely with the overweight and obese would pronounce its main thesis—that sustaining weight loss is nearly impossible—dead wrong, and misleading in a way that could seriously, if indirectly, damage the health of millions of people.

Many readers—including a number of physicians, nutritionists, and mental-health professionals—took to the blogs in the days after the article appeared to note its major omissions and flaws. These included the fact that the research Parker-Pope most prominently cites, featuring it in a long lead, was a tiny study that required its subjects to go on a near-starvation diet, a strategy that has long been known to produce intense food cravings and rebound weight gain; the fact that many programs and studies routinely record sustained weight-loss success rates in the 30-percent range; and Parker-Pope's focus on willpower-driven, intense diet-and-exercise regimens as the main method of weight loss, when most experts have insisted for some time now that successful, long-term weight loss requires permanent, sustainable, satisfying lifestyle changes, bolstered by enlisting social support and reducing the temptations and triggers in our environments—the so-called "behavioral modification" approach typified by Weight Watchers, and backed by research studies again and again.

Echoing the sentiments of many experts, Barbara Berkeley, a physician who has long specialized in weight loss, blogged that the research Parker-Pope cites doesn't match reality. "Scientific research needs to square with what we see in clinical practice," she wrote. "If it doesn't, we should question its validity." David Katz, a prominent physician-researcher who runs the Yale Prevention Research Center and edits the journal Childhood Obesity, charged in his Huffington Post blog that Parker-Pope, by listing all the biological mechanisms that work against weight loss, was simply asking the wrong question. "Let's beware the hidden peril of that genetic and biological understanding," he wrote. "It can be hard to see what's going on all around you while looking through the lens of a microscope." In fact, most of us know people—friends, family members, colleagues—who have lost weight and kept it off for years by changing the way they eat and boosting their physical activity. They can't all be freaks of biology, as Parker-Pope's article implies.

The Times has run into similar trouble with other prominent articles purporting to cut through the supposed mystery of why the world keeps getting dangerously fatter. One such piece pointed the finger at sugar and high-fructose corn syrup, another at bacteria. But perhaps the most controversial of the Times's solution-to-the-obesity-crisis articles was the magazine's cover story in 2002, by science writer Gary Taubes, that made the case that high-fat diets are perfectly slimming—as long as one cuts out all carbohydrates. His article's implicit claim that copious quantities of bacon are good for weight loss, while oatmeal, whole wheat, and fruit will inevitably fatten you up, had an enormous impact on the public's efforts to lose weight, and to this day many people still turn to Atkins and other ultra-low-carb, eat-all-the-fat-you-want diets to try to shed excess pounds. Unfortunately, it's an approach that leaves the vast majority of frontline obesity experts gritting their teeth, because while the strategy sometimes appears to hold up in studies, in the real world such dieters are rarely able to keep the weight off—to say nothing of the potential health risks of eating too much fat. And of course, the argument Taubes laid out stands in direct opposition to the claims of the Parker-Pope article. Indeed, most major Times articles on obesity contradict one another, and they all gainsay the longstanding consensus of the field.

The problem isn't unique to the Times, or to the subject of weight loss. In all areas of personal health, we see prominent media reports that directly oppose well-established knowledge in the field, or that make it sound as if scientifically unresolved questions have been resolved. The media, for instance, have variously supported and shot down the notion that vitamin D supplements can protect against cancer, and that taking daily and low doses of aspirin extends life by protecting against heart attacks. Some reports have argued that frequent consumption of even modest amounts of alcohol leads to serious health risks, while others have reported that daily moderate alcohol consumption can be a healthy substitute for exercise. Articles sang the praises of new drugs like Avastin and Avandia before other articles deemed them dangerous, ineffective, or both.

What's going on? The problem is not, as many would reflexively assume, the sloppiness of poorly trained science writers looking for sensational headlines, and ignoring scientific evidence in the process. Many of these articles were written by celebrated health-science journalists and published in respected magazines and newspapers; their arguments were backed up with what appears to be solid, balanced reporting and the careful citing of published scientific findings.

But personal-health journalists have fallen into a trap. Even while following what are considered the guidelines of good science reporting, they still manage to write articles that grossly mislead the public, often in ways that can lead to poor health decisions with catastrophic consequences. Blame a combination of the special nature of health advice, serious challenges in medical research, and the failure of science journalism to scrutinize the research it covers.

Personal-health coverage began to move to the fore in the late 1980s, in line with the media's growing emphasis on "news you can use." That increased attention to personal health ate into coverage of not only other science, but also of broader healthcare issues. A 2009 survey of members of the Association of Health Care Journalists found that more than half say "there is too much coverage of consumer or lifestyle health," and more than two-thirds say there isn't enough coverage of health policy, healthcare quality, and health disparities.

The author of a report based on that survey, Gary Schwitzer, a former University of Minnesota journalism researcher and now publisher of healthcare-journalism watchdog, also conducted a study in 2008 of 500 health-related stories published over a 22-month period in large newspapers. The results suggested that not only has personal-health coverage become invasively and inappropriately ubiquitous, it is of generally questionable quality, with about two-thirds of the articles found to have major flaws. The errors included exaggerating the prevalence and ravages of a disorder, ignoring potential side effects and other downsides to treatments, and failing to discuss alternative treatment options. In the survey, 44 percent of the 256 staff journalists who responded said that their organizations at times base stories almost entirely on press releases. Studies by other researchers have come to similar conclusions.

Thoughtful consumers with even a modest knowledge of health and medicine can discern at a glance that they are bombarded by superficial and sometimes misleading "news" of fad diets, miracle supplements, vaccine scares, and other exotic claims that are short on science, as well as endlessly recycled everyday advice, such as being sure to slather on sun protection. But often, even articles written by very good journalists, based on thorough reporting and highly credible sources, take stances that directly contradict those of other credible-seeming articles.

There is more at stake in these dueling stories than there would be if the topic at hand were, say, the true authorship of Shakespeare's plays. Personal healthcare decisions affect our lifespan, the quality of our lives, and our productivity, and the result—our collective health—has an enormous impact on the economy. Thirty years ago, misleading health information in the press might not have been such a problem, since at the time physicians generally retained fairly tight control of patient testing and treatment decisions. Today, however, the patient is in the driver's seat when it comes to personal health. What's more, it is increasingly clear that the diseases that today wreak the most havoc—heart disease, cancer, diabetes, and Alzheimer's—are most effectively dealt with not through medical treatment, but through personal lifestyle choices, such as diet, exercise, and smoking habits.

Consider the potential damage of bad weight-loss-related journalism. Obesity exacerbates virtually all major disease risks—and more than one in 20 deaths in the US is a premature death related to obesity, according to a 2007 Journal of the American Medical Association study. Obesity carries an annual price tag of as much as $5,000 a year in extra medical costs and lost productivity, for a total cost to the US economy of about $320 billion per year—a number that could quadruple within 10 years as obesity rates climb, according to some studies. (There is, of course, a lot of uncertainty in cost projections, and this research does not account for the impact of the Affordable Care Act.) On top of these costs are the subjective costs of the aches, discomforts, and compromised mobility associated with obesity.

Meanwhile, there's a wide range of convincing-sounding yet wildly conflicting weight-loss-related claims made by prominent science journalists. People who might otherwise be able to lose weight on the sort of sensible, lifestyle-modification program recommended by most experts end up falling for the faddish, ineffective approaches touted in these articles, or are discouraged from trying at all. For example, innumerable articles (including Parker-Pope's Times piece) have emphasized the notion that obesity is largely genetically determined. But study after study has shown that obesity tends to correlate to environment, not personal genome, as per the fact that people who emigrate from countries with traditionally low obesity rates, such as China, tend to hew to the obesity rates of their adopted countries. What's more, global obesity rates are rapidly rising year by year, including in China, whereas the human genome barely changes over thousands of years. And studies clearly show that "obesity genes" are essentially neutralized by healthy behaviors such as exercise.

It is not encouraging to those trying to muster the focus and motivation to stick to a healthy-eating-and-exercise program to hear that their obesity is largely genetically determined, suggesting—sometimes explicitly—that the obese are doomed to remain so no matter what they do. A 2011 New England Journal of Medicine study (as reported in The New York Times) found that people tend to binge after they find out they carry a supposed fat-promoting gene. Other studies have shown—in keeping with common sense—that one of the best predictors of whether someone starting a weight-loss program will stick with it is how strongly the person believes it will succeed. When journalists erode that confidence with misleading messages, the results are easy to predict.

When science journalism goes astray, the usual suspect is a failure to report accurately and thoroughly on research published in peer-reviewed journals. In other words, science journalists are supposed to stick to what well-credentialed scientists are actually saying in or about their published findings—the journalists merely need to find a way to express this information in terms that are understandable and interesting to readers and viewers.

But some of the most damagingly misleading articles don't stem from the reporter's failure to do this. Rather, science reporters—along with most everyone else—tend to confuse the findings of published science research with the closest thing we have to the truth. But as is widely acknowledged among scientists themselves, and especially within medical science, the findings of published studies are beset by a number of problems that tend to make them untrustworthy, or at least render them exaggerated or oversimplified.

It's easy enough to verify that something is going wrong with medical studies by simply looking up published findings on virtually any question in the field and noting how the findings contradict, sometimes sharply. To cite a few examples out of thousands, studies have found that hormone-replacement therapy is safe and effective, and also that it is dangerous and ineffective; that virtually every vitamin supplement lowers the risk of various diseases, and also that they do nothing for these diseases; that low-carb, high-fat diets are the most effective way to lose weight, and that high-carb, low-fat diets are the most effective way to lose weight; that surgery relieves back pain in most patients, and that back surgery is essentially a sham treatment; that cardiac patients fare better when someone secretly prays for them, and that secret prayer has no effect on cardiac patients. (Yes, these latter studies were undertaken by respected researchers and published in respected journals.)

Biostatisticians have studied the question of just how frequently published studies come up with wrong answers. A highly regarded researcher in this subfield of medical wrongness is John Ioannidis, who heads the Stanford Prevention Research Center, among other appointments. Using several different techniques, Ioannidis has determined that the overall wrongness rate in medicine's top journals is about two thirds, and that estimate has been well-accepted in the medical field.

A frequent defense of this startling error rate is that the scientific process is supposed to wend its way through many wrong ideas before finally approaching truth. But that's a complete mischaracterization of what's going on here. Scientists might indeed be expected to come up with many mistaken explanations when investigating a disease or anything else. But these "mistakes" are supposed to come in the form of incorrect theories—that a certain drug is safe and effective for most people, that a certain type of diet is better than another for weight loss. The point of scientific studies is to determine whether a theory is right or wrong. A study that accurately finds a theory to be incorrect has arrived at a correct finding. A study that mistakenly concludes an incorrect theory is correct, or vice-versa, has arrived at a wrong finding. If scientists can't reliably test the correctness of their theories, then science is in trouble—bad testing isn't supposed to be part of the scientific process. Yet medical journals, as we've seen, are full of such unreliable findings.

Another frequent claim, especially within science journalism, is that the wrongness problems go away when reporters stick with randomized control trials (RCTs). These are the so-called gold standard of medical studies, and typically involve randomly assigning subjects to a treatment group or a non-treatment group, so that the two groups can be compared. But it isn't true that journalistic problems stem from basing articles on studies that aren't RCTs. Ioannidis and others have found that RCTs, too (even large ones), are plagued with inaccurate findings, if to a lesser extent. Remember that virtually every drug that gets pulled off the market when dangerous side effects emerge was proven "safe" in a large RCT. Even those studies of the effectiveness of third-party prayer were fairly large RCTs. Meanwhile, some of the best studies have not been rcts, including those that convincingly demonstrated the danger of cigarettes, and the effectiveness of seat belts.

Why do studies end up with wrong findings? In fact, there are so many distorting forces baked into the process of testing the accuracy of a medical theory, that it's harder to explain how researchers manage to produce valid findings, aside from sheer luck. To cite just a few of these problems:

Mismeasurement To test the safety and efficacy of a drug, for example, what researchers really want to know is how thousands of people will fare long-term when taking the drug. But it would be unethical (and illegal) to give unproven drugs to thousands of people, and no one wants to wait 20 years for results. So scientists must rely on animal studies, which tend to translate poorly to humans, and on various short-cuts and indirect measurements in human studies that they hope give them a good indication of what a new drug is doing. The difficulty of setting up good human studies, and of making relevant, accurate measurements on people, plagues virtually all medical research.

Confounders Study subjects may lose weight on a certain diet, but was it because of the diet, or because of the support they got from doctors and others running the study? Or because they knew their habits and weight were being recorded? Or because they knew they could quit the diet when the study was over? So many factors affect every aspect of human health that it's nearly impossible to tease them apart and see clearly the effect of changing any one of them.

Publication bias Research journals, like newsstand magazines, want exciting stories that will have impact on readers. That means they prefer studies that deliver the most interesting and important findings, such as that a new treatment works, or that a certain type of diet helps most people lose weight. If multiple research teams test a treatment, and all but one find the treatment doesn't work, the journal might well be interested in publishing the one positive result, even though the most likely explanation for the oddball finding is that the researchers behind it made a mistake or perhaps fudged the data a bit. What's more, since scientists' careers depend on being published in prominent journals, and because there is intense competition to be published, scientists much prefer to come up with the exciting, important findings journals are looking for—even if it's a wrong finding. Unfortunately, as Ioannidis and others have pointed out, the more exciting a finding, the more likely it is to be wrong. Typically, something is exciting specifically because it's unexpected, and it's unexpected typically because it's less likely to occur. Thus, exciting findings are often unlikely findings, and unlikely findings are often unlikely for the simple reason that they're wrong.

Ioannidis and others have noted that the supposed protection science offers to catch flawed findings—notably peer review andreplication—is utterly ineffective at detecting most problems with studies, from mismeasurement to outright fraud (which, confidential surveys have revealed, is far more common in research than most people would suppose).

None of this is to say that researchers aren't operating as good scientists, or that journals don't care about the truth. Rather, the point is that scientists are human beings who, like all of us, crave success, status, and funding, and who make mistakes; and that journals are businesses that need readers and impact to thrive.

It's one thing to be understanding of these challenges scientists and their journals face, and quite another to be ignorant of the problems they cause, or to fail to acknowledge those problems. But too many health journalists tend to simply pass along what scientists hand them—or worse, what the scientists' PR departments hand them. Two separate 2012 studies of mass-media health articles, one published in PLoS Medicine and the other in The British Medical Journal, found that the content and quality of the articles roughly track the content and quality of the press releases that described the studies' findings.

Given that published medical findings are, by the field's own reckoning, more often wrong than right, a serious problem with health journalism is immediately apparent: A reporter who accurately reports findings is probably transmitting wrong findings. And because the media tend to pick the most exciting findings from journals to pass on to the public, they are in essence picking the worst of the worst. Health journalism, then, is largely based on a principle of survival of the wrongest. (Of course, I quote studies throughout this article to support my own assertions, including studies on the wrongness of other studies. Should these studies be trusted? Good luck in sorting that out! My advice: Look at the preponderance of evidence, and apply common sense liberally.)

What is a science journalist's responsibility to openly question findings from highly credentialed scientists and trusted journals? There can only be one answer: The responsibility is large, and it clearly has been neglected. It's not nearly enough to include in news reports the few mild qualifications attached to any study ("the study wasn't large," "the effect was modest," "some subjects withdrew from the study partway through it"). Readers ought to be alerted, as a matter of course, to the fact that wrongness is embedded in the entire research system, and that few medical research findings ought to be considered completely reliable, regardless of the type of study, who conducted it, where it was published, or who says it's a good study.

Worse still, health journalists are taking advantage of the wrongness problem. Presented with a range of conflicting findings for almost any interesting question, reporters are free to pick those that back up their preferred thesis—typically the exciting, controversial idea that their editors are counting on. When a reporter, for whatever reasons, wants to demonstrate that a particular type of diet works better than others—or that diets never work—there is a wealth of studies that will back him or her up, never mind all those other studies that have found exactly the opposite (or the studies can be mentioned, then explained away as "flawed"). For "balance," just throw in a quote or two from a scientist whose opinion strays a bit from the thesis, then drown those quotes out with supportive quotes and more study findings.

Of course, journalists who question the general integrity of medical findings risk being branded as science "denialists," lumped in with crackpots who insist evolution and climate change are nonsense. My own experience is that scientists themselves are generally supportive of journalists who raise these important issues, while science journalists are frequently hostile to the suggestion that research findings are rife with wrongness. Questioning most health-related findings isn't denying good science—it's demanding it.

Ironically, we see much more of this sort of skeptical, broad-perspective reporting on politics, where politicians' claims and poll results are questioned and factchecked by journalists, and on business, where the views of CEOs and analysts and a range of data are played off against one another in order to provide a fuller, more nuanced picture.

Yet in health journalism (and in science journalism in general), scientists are treated as trustworthy heroes, and journalists proudly brag on their websites about the awards and recognition they've received from science associations—as if our goal should be to win the admiration of the scientists we're covering, and to make it clear we're eager to return the favor. The New York Times's highly regarded science writer Dennis Overbye wrote in 2009 that scientists' "values, among others, are honesty, doubt, respect for evidence, openness, accountability and tolerance and indeed hunger for opposing points of view." But given what we know about the problems with scientific studies, anyone who wants to assert that science is being carried out by an army of Abraham Lincolns has a lot of explaining to do. Scientists themselves don't make such a claim, so why would we do it on their behalf? We owe readers more than that. Their lives may depend on it.

Fecal Treatment Gains Favor for Some Illnesses -

The treatment may sound appalling, but it works.

Transplanting feces from a healthy person into the gut of one who is sick can quickly cure severe intestinal infections caused by a dangerous type of bacteria that antibiotics often cannot control.

A new study finds that such transplants cured 15 of 16 people who had recurring infections with Clostridium difficile bacteria, whereas antibiotics cured only 3 of 13 and 4 of 13 patients in two comparison groups. The treatment appears to work by restoring the gut's normal balance of bacteria, which fight off C. difficile.

The study is the first to compare the transplants with standard antibiotic therapy. The research, conducted in the Netherlands, was published Wednesday in The New England Journal of Medicine.

Fecal transplants have been used sporadically for years as a last resort to fight this stubborn and debilitating infection, which kills 14,000 people a year in the United States. The infection is usually caused by antibiotics, which can predispose people to C. difficile by killing normal gut bacteria. If patients are then exposed to C. difficile, which is common in many hospitals, it can take hold.

The usual treatment involves more antibiotics, but about 20 percent of patients relapse, and many of them suffer repeated attacks, with severe diarrhea, vomiting and fever.

Researchers say that, worldwide, about 500 people with the infection have had fecal transplantation. It involves diluting stool with a liquid, like salt water, and then pumping it into the intestinal tract via an enema, a colonoscope or a tube run through the nose into the stomach or small intestine.

Stool can contain hundreds or even thousands of types of bacteria, and researchers do not yet know which ones have the curative powers. So for now, feces must be used pretty much intact.

Medical journals have reported high success rates and seemingly miraculous cures in patients who have suffered for months. But until now there was room for doubt, because no controlled experiments had compared the outlandish-sounding remedy with other treatments.

The new research is the first to provide the type of evidence that skeptics have demanded, and proponents say they hope the results will help bring fecal transplants into the medical mainstream, because for some patients nothing else works.

"Those of us who do fecal transplant know how effective it is," said Dr. Colleen R. Kelly, a gastroenterologist with the Women's Medicine Collaborative in Providence, R.I., who was not part of the Dutch study. "The tricky part has been convincing everybody else."

She added, "This is an important paper, and hopefully it will encourage people to change their practice patterns and offer this treatment more."

One of Dr. Kelly's patients, Melissa Cabral, 34, of Dighton, Mass., was healthy until she contracted C. difficile in July after taking an antibiotic for dental work. She had profuse diarrhea, uncontrollable vomiting and high fevers that landed her in the hospital. She suffered repeated bouts, lost 12 pounds and missed months of work. Her young children would find her lying on the bathroom floor.

Initially, she rejected a fecal transplant because the idea disgusted her, but ultimately she became so desperate for relief that in November she tried it.

Within a day, her symptoms were gone.

"If I didn't do it, I don't know where I'd be now," she said.

Dr. Lawrence J. Brandt, a professor at the Albert Einstein College of Medicine in New York, said that the Food and Drug Administration had recently begun to regard stool used for transplant as a drug, and to require doctors administering it to apply for permission, something that he said could hinder treatment.

A spokeswoman for the agency, Rita Chappelle, said officials could not respond in time for publication.

C. difficile is a global problem. Increasingly toxic strains have emerged in the past decade. In the United States, more than 300,000 patients in hospitals contract C. difficile each year, and researchers estimate that the total number of cases, in and out of hospitals, may be three million. Treatment costs exceed $1 billion a year.

Fecal therapy has often been used to cure gut trouble in cows and horses. Books on traditional Chinese medicine mention giving it to people by mouth to cure diarrhea in the fourth century; one book called it yellow soup.

In 1958, Dr. Ben Eiseman, of the University of Colorado, published a report about using fecal enemas to cure four patients with life-threatening intestinal infections.

The senior author of the new study, Dr. Josbert Keller, a gastroenterologist at the Hagaziekenhuis hospital in The Hague, said that before conducting the research, he and his colleagues had performed the transplant in about 10 cases, and it almost always worked.

"After the first four or five patients, we started thinking, 'We can't go on doing this kind of obscure treatment without evidence,' " Dr. Keller said. "Everybody is laughing about it."

The researchers studied adults who had been suffering from C. difficile for months and had had at least one relapse after antibiotics. They were picked at random to be in one of three groups. Only one group, 16 people, had the transplant: they took the antibiotic vancomycin for four days, had their intestines rinsed and then had the fecal solution pumped into their small intestines through a nose tube. A second group, 13 people, had the intestinal wash and 14 days of vancomycin; a third group, also 13 people, had only vancomycin.

The donors were tested for an array of diseases to make sure they did not infect the patients. Their specimens were mixed with saline in a blender and strained, to produce a solution that Dr. Keller said resembled chocolate milk.

Dr. Keller said that patients were so eager to receive transplants that they would not join the study unless the researchers promised that those assigned to antibiotics alone would get transplants later if the drugs failed.

Among the 16 who received transplants, 13 were cured after the first infusion. The other three were given repeat infusions from different donors, and two were also cured. In the two groups of patients who did not receive transplants, only 7 of 26 were cured.

Of the patients who did not receive transplants at first and who relapsed after receiving antibiotics only, 18 were subsequently given transplants, and 15 were cured.

The study was originally meant to include more patients, but it had to be cut short because the antibiotic groups were faring so poorly compared with the transplant patients that it was considered unethical to continue.

The results come as no surprise to doctors who have tried the procedure. Dr. Alexander Khoruts, a gastroenterologist at the University of Minnesota, said he had performed the transplants in more than 100 patients with C. difficile. He said that it worked the first time in 90 percent, and that the other 10 percent were cured with a second treatment. The procedure can be done with a stool solution that has been frozen and thawed, he said.

One of Dr. Khoruts's concerns about the procedure is that many people assume it can be used for a variety of intestinal problems. He cautioned that, so far, the only real evidence is for C. difficile.

Eventually, he said, if researchers can determine which bacteria are crucial, it should become possible to create products containing them, and to spare everyone the unpleasantness of dealing with stool specimens.

Wednesday, January 16, 2013

Patient Power

Patient Power® is a service of Patient Power, LLC, based in Seattle and founded by two health communications pioneers, Andrew and Esther Schorr. They previously founded HealthTalk, a leader in support for people with chronic illnesses and cancer. Patient Power® is devoted to helping you and your family through knowledge, to get the best medicine and return to good health.

Andrew lived that. In 1996 through a routine blood test he was diagnosed with a leukemia. By reaching out to other patients and connecting with doctors who specialize in his illness he participated in a clinical trial, received "tomorrow's medicine today" and now, 12 years after diagnosis, remains in deep remission and takes no medicines.

While Andrew's success won't be everyone's story, he is committed to helping each person he touches approach their illness in a way that gives them the best chance of good health: getting smart about their diagnosis, seeking out the best healthcare providers, getting second and even third opinions on what approach to take, and drawing on others for support.

Patient Power® is built on a library of programs, which continues to grow with the addition of each week's new webcasts. These programs feature top medical experts and inspiring patients from some of America's leading medical institutions.  They can be heard live on the Web and past programs can be found on theProgram Replay Library page.

Tuesday, January 15, 2013

One in three American adults have gone online to figure out a medical condition | Pew Internet & American Life Project

Thirty-five percent of U.S. adults say that at one time or another they have gone online specifically to try to figure out what medical condition they or someone else might have.

These findings come from a national survey by the Pew Research Center's Internet & American Life Project. Throughout this report, we call those who searched for answers on the internet "online diagnosers."

When asked if the information found online led them to think they needed the attention of a medical professional, 46% of online diagnosers say that was the case. Thirty-eight percent of online diagnosers say it was something they could take care of at home and 11% say it was both or in-between.

When we asked respondents about the accuracy of their initial diagnosis, they reported:

• 41% of online diagnosers say a medical professional confirmed their diagnosis. An additional 2% say a medical professional partially confirmed it.
• 35% say they did not visit a clinician to get a professional opinion.
• 18% say they consulted a medical professional and the clinician either did not agree or offered a different opinion about the condition.
• 1% say their conversation with a clinician was inconclusive.

Women are more likely than men to go online to figure out a possible diagnosis. Other groups that have a high likelihood of doing so include younger people, white adults, those who live in households earning $75,000 or more, and those with a college degree or advanced degrees.

It is important to note what these findings mean – and what they don't mean. Historically, people have always tried to answer their health questions at home and made personal choices about whether and when to consult a clinician. Many have now added the internet to their personal health toolbox, helping themselves and their loved ones better understand what might be ailing them. This study was not designed to determine whether the internet has had a good or bad influence on health care. It measures the scope, but not the outcome, of this activity.

Clinicians are a central resource for information or support during serious health episodes — and the care and conversation take place mostly offline

To try to capture a focused picture of people's health information search and information-assessment strategies, we asked respondents to think about the last time they had a serious health issue and to whom they turned for help, either online or offline:

• 70% of U.S. adults got information, care, or support from a doctor or other health care professional.
• 60% of adults got information or support from friends and family.
• 24% of adults got information or support from others who have the same health condition.

The vast majority of this care and conversation took place offline, but a small group of people did communicate with each of these sources online. And, since a majority of adults consult the internet when they have health questions, these communications with clinicians, family, and fellow patients joined the stream of information flowing in.

Eight in 10 online health inquiries start at a search engine

Looking more broadly at the online landscape, 72% of internet users say they looked online for health information of one kind or another within the past year.  This includes searches related to serious conditions, general information searches, and searches for minor health problems. For brevity's sake, we will refer to this group as "online health seekers."

When asked to think about the last time they hunted for health or medical information, 77% of online health seekers say they began at a search engine such as Google, Bing, or Yahoo. Another 13% say they began at a site that specializes in health information, like WebMD. Just 2% say they started their research at a more general site like Wikipedia and an additional 1% say they started at a social network site like Facebook.

Half of health information searches are on behalf of someone else

When asked to think about the last time they went online for health or medical information, 39% of online health seekers say they looked for information related to their own situation. Another 39% say they looked for information related to someone else's health or medical situation. An additional 15% of these internet users say they were looking both on their own and someone else's behalf.

One in four people seeking health information online have hit a pay wall

Twenty-six percent of internet users who look online for health information say they have been asked to pay for access to something they wanted to see online.  Of those who have been asked to pay, just 2% say they did so. Fully 83% of those who hit a pay wall say they tried to find the same information somewhere else. Thirteen percent of those who hit a pay wall say they just gave up.

The social life of health information is a low-key but steady presence in American life

In past surveys, the Pew Internet Project has not defined a time period for health activities online. This time, the phrase "in the past 12 months" was added to help focus respondents on recent episodes. We find once again that there is a social life of health information, as well as peer-to-peer support, as people exchange stories about their own health issues to help each other understand what might lie ahead:

• 26% say they read or watched someone else's experience about health or medical issues in the last 12 months.
• 16% of internet users say they went online in the last year to find others who might share the same health concerns.
Health-related reviews and rankings continue to be used by only a modest group of consumers. About one in five internet users have consulted online reviews of particular drugs or medical treatments, doctors or other providers, and hospitals or medical facilities. And just 3-4% of internet users have posted online reviews of health care services or providers.

Monday, January 14, 2013

Medicine and hospitals: A doctor's advice for being admitted to a hospital - Slate

This question originally appeared on Quora.

Answer by Andrew Young Shin, pediatric cardiologist:

How to survive your hospitalization. 

Most people feel that the equation to survive your hospitalization predominantly involves the expertise of your surgeon and the disease at hand. 

In fact, there is a silent factor that contributes to a phenomenon that is increasingly gaining attention in the medical community, administrative leadership, insurance agencies, and popular media: Death related to preventable errors. In To Err is Human, the Institute of Medicine concluded that between 44,000 to 98,000 Americans die each year as a result of medical errors. For comparison, deaths attributable to medical errors exceed those that die from motor vehicle accidents (43,458), breast cancer (42,297), and illicit drug use (17,000). 

What can you do as a patient?

The following are suggestions as a fellow patient and current physician who spends most of my hours thinking of ways to minimize errors:

1. The central venous catheter.
This is the gateway into your bloodstream to sample blood and deliver medications. These catheters can be lifesaving, but, in the same breath, they can also be life-threatening. These indwelling catheters can easily deliver a much needed medication to your body, but they can just as easily introduce a bacterial or fungal infection systemically. 

What you can do:

  • Before your hospitalization, look up your particular hospital: Most hospitals are required by the state to publicly display their Catheter-Associated bloodstream infection rates. Don't be discouraged if your hospital is a "low-performer" when it comes to infection-control: most hospitals are still on a learning curve.
  • Ask your doctor DAILY: "When can this catheter come out?" Be a broken record about it. The DAILY assessment of the need for a central venous catheter is a PROVEN way to minimize your risk.
  • If your hospital is a low-performer, be knowledgeable about the best-way to avoid an infection. Before a health care worker accesses your central catheter, they should scrub the entry port at least 15 seconds (not 14 seconds) and let it dry for 15 seconds. Each and every time. Talk to your providers in the beginning and review your expectations and knowledge about this. There are graceful ways of talking about this, but at the end of the day, it's your body and your risk should they cut corners in this evidence-based technique. Use your family members to be auditors in this practice.

2. Communication is everything.
In 2004, the Joint Commission of Accredited Hospitals reviewed all deaths that occurred in a major academic hospital as a result of error. A breakdown in communication was found to be the root cause in more than 70 percent of the cases.

What you can do:

Each day, in a notebook, review the following with your physician:

  • How am I doing? (daily assessment)
  • What's my goal for today? (daily plan)

The care of the hospitalized patient spans more than one team, one shift, one day. Your care plan gets passed from a morning team, to an afternoon team, and to a cross-covering evening team. The next day may introduce new people to your care altogether. By writing down what your primary team sets for you, you share in the authority for continuity in care.

Review your care plan with each new staff that takes responsibility for your care. Consulting teams can quickly get on the same page if you are part owner in the care plan. Clear communication across multiple healthcare team members is commonly expected but, as in the Joint Commission's report, should not be assumed.

3. No pain, no gain.
Expect post-operative pain. Setting this crucial expectation early and upfront is important. The body undergoes major adaptive changes following a big operation. Muscles quickly weaken, hormones shift, appetites suffer, and malnourishment exaggerates the insult to the body. Early rehabilitation hurts, but it also reverses all of these maladaptive processes. Adjust your post-operative pain medications as a means for rehabilitation, not as a means to remain comfortable in bed.

What you can do:

  • Rehab early and often. If you are bed-bound, ask for a "Incentive spirometer" and use it every hour while awake. This is exercise time and crucial to your recovery. If it hurts to take a deep breath, use your pain medications to enable yourself. If you are knocked out, your dose is too high.
  • Ambulate as early as possible. You will likely be miserable at the first attempt, but take courage: It will only get easier, and it's good for your lungs. Ambulating (and simply getting out of the laying position) avoids lung collapse which can lead to pneumonia. Better oxygenation helps tissue healing which leads to faster recovery.

4Maintain your sleep-wake cycle.
Recovery from surgery often involves recovery from anesthesia. Sedatives used in the post-operative period helps keep you calm, but the sleep is not qualitatively restful. You may also find that there will be many obstacles to a normal circadian cycle (vital sign checks every four hours, noisy monitors, noisy neighbors, etc).

What you can do:  

  • As much as possible, keep your blinds open during the day and be exposed to natural light. Try to stay active during the day. Avoid frequent naps during the day lest you fall victim to delirium. At night, cover your windows to block out the night lights.
  • There are not a lot of pharmaceutical sleep aids that are evidence-based. If one works for you, bring your home supply (as hospitals may not stock your particular medication).

5. The notebook.
Many patients are surprised that they see their physician only once per day, often early in the morning. It's hard to remember all your questions that has formulated throughout the day in a time-pressured setting. 

What you can do:

  • Write down your questions as they come throughout the day.
  • Enlist the help of your nurse to get your answers. Your nurse will often be your best advocate. A nurse could even take the list of questions you've written down in advance and make sure the medical team covers your basic concerns.
  • It's okay to ask to speak to the physician at any time during the day.

Hopefully, having these insights and strategic tools will help you navigate the complicated waters of being a hospitalized patient. Healing is hastened with the mindset that recovery is an active, not a passive process. Additionally, being a pro-active patient will often give you a necessary edge to avoid the mistakes, errors, and complications that many hospitals are still trying to figure out.