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2009 was not a good year for the public's understanding of evidence.
Tuesday's New York Times ran a story about the unreliability of the tests and the variation among laboratory standards that determine the potential effectiveness of new targeted cancer treatments. Linda Griffin, a physician with breast cancer, described the series of treatment decisions she made with her doctors about whether or not to take the very expensive, fairly disruptive and potentially very effective drug, Herceptin, based on a genetic test that was inconclusive and further, which produced different findings when the same material was retested.
Last week The New York Times published a front-page feature about how diagnosing breast cancer can be surprisingly difficult, prone to both outright error and case-by-case disagreement over whether a cluster of cells is benign or malignant.
Delivering evidence-based medicine is a deceptively elegant and simple goal.' But new findings about the increase in antibiotic resistance challenge us to consider just how complicated and challenging it is to actually define and deliver evidence-based care.'
Problems with evidence-based guidelines and comparative effectiveness research all have at their core the conflict between averages and individuals.
Exploring these questions is relevant to all who are working to support people's engagement in their health and health care. They are also relevant to the debate about the value of comparative effectiveness research. Science journalist Chris Mooney reports a couple of provocative points in this account of four meetings on the topic sponsored by the American Academy of Arts and Sciences over the past year.
There's an extraordinary new article in The Atlantic, 'Lies, Damned Lies, and Medical Science.' It echoes the excellent article in our Journal of Participatory Medicine (JoPM) one year ago this week, by Richard W. Smith, 25 year editor of the British Medical Journal: In Search Of an Optimal Peer Review System.
The increasing presence (sometime hidden) of advertisers in health care websites - including the new Sharecare - was discussed this week by healthcare journalists Gary Schwitzer and Pia Christensen, Dr. Elaine Schattner, M.D. and marketer and advertiser Dan Dunlop
We advocate science-based medicine (SBM) on the Science-Based Medicine blog. However, from time to time, I feel it necessary to point out that science-based medicine is not the same thing as turning medicine into a science. Rather, we argue that what we do as clinicians should be based in science. This is not a distinction without a difference. If we were practicing pure science, we would be theoretically able to create algorithms and flowcharts telling us how to care for patients with any given condition, and we would never deviate from them.
I've been following evidence-based medicine for many years and I've been appalled by the way it is playing out. We have pay-for-performance that does not understand that the reliability we are after is not in reliably (read blindly) applying a guideline to a patient population, but rather reliably considering how the evidence applies to the individual in a health care interaction. We have guidelines that are based on expert opinion, often influenced by drug company funding, or based on bad science. And we have a news media that seems unable to present medical findings in a balanced and understandable way.
Media coverage of the government's new investment in comparative effectiveness research leans heavily toward the effects of such research on new drugs and technologies: Will such evaluations lead to restricted access to the latest innovations? Will insurance no longer cover a drug that might give my aunt another year to live? Will such research hinder the development of a drug that could cure my nephew of type 1 diabetes?
When her grandmother experienced a sudden onset of dizziness, slurred speech and facial drooping, Kafi Grigsby found herself in an emergency department waiting room, surrounded by five doctors with four different opinions on what had occurred and how to treat it.
Dr. Sloan's piece 'A Fighting Spirit Won't Save Your Life', that recently ran in The Opinion Pages of the New York Times, calls into question our belief that we can affect our health through optimism and positive thinking.
The February issue of Prevention magazine has an article, "Surprising Faces of Heart Attack" profiling "three women (who) didn't think they were at high risk. Their stories are proof that you could be in danger without even knowing it." No, their stories are not proof of that.
I am so tired of this all-or-nothing discussion about science! On the one hand there is a chorus singing praises to science and calling people who are skeptical of certain ideas unscientific idiots. On the other, with equal penchant for eminence-based thinking, are the masses convinced of conspiracies and nefarious motives of science and its perpetrators. And neither will stop and listen to the other side's objections, and neither will stop the name-calling. So, is it any wonder we are not getting any closer to the common ground?
Fascinating, how in the same week two giants of evidence-based medicine have given such divergent views on the future of quality improvement. Donald Berwick, the CMS administrator and founder and former head of the Institute for Health Care Improvement, emphasizes the need for quality as the strategy for success in our healthcare system. But one of the fathers of EBM, Muir Gray, states that quality is so 20th century, and we need instead to shine the light on value. So, who is right?
Diana Mason, former editor-in-chief of the American Journal of Nursing, interviews Program Officer at The John A. Hartford Foundation, Amy Berman, and The New York Times blogger and nurse, Theresa Brown. Amy Berman was diagnosed with Stage IV breast cancer earlier this year, and in this interview, she says, 'Nothing was off limits.'
Before we had EBM (evidence-based medicine) we had another kind of EBM: experience-based medicine. Mark Crislip has said that the three most dangerous words in medicine are 'In my experience.' I agree wholeheartedly.
In my recent review of Peter Palmieri's book Suffer the Children I said I would later try to cover some of the many other important issues he brings up. One of the themes in the book is the process of critical thinking and the various cognitive traps doctors fall into. I will address some of them here. This is not meant to be systematic or comprehensive, but rather a miscellany of things to think about. Some of these overlap.
Being actively engaged in your health care means understanding how the care you are receiving will benefit you. We expect the care we receive and the health advice we are offered to be evidence based, using the best research available. Journalists, a researcher, and a doctor call attention to common practices where evidence is lacking.
I have a fear. My fear is that the public has an unrealistic view of medicine and the science behind it.
The women recounted how their lives had been saved as they pleaded for the Food and Drug Administration not to withdraw approval for Avastin as a treatment for advanced breast cancer. They did so even without evidence that it provides benefit and with evidence that it confers risks.
Eric Topol, MD wrote an interesting commentary in the July 7, 2011 issue of the New England Journal of Medicine, titled 'The Lost Decade of Nesiritide.' Nesiritide is a drug for heart failure symptoms (e.g., shortness of breath) that was approved by the FDA in 2001. Since that time, according to Dr. Topol, 'well more than $1 Billion was wasted on purchasing the drug.'
News of the World wasn't read by 15 percent of the British public because it told people what they should know. It got there by giving them what they wanted: stories about the peccadilloes of the rich and famous, accounts of the gross incompetence of government and of course, pictures of naked ladies.
Practitioners of evidence-based medicine use published evidence from the medical literature to guide them as they try to provide the best care for each patient. But sometimes the medical literature just feels like a big morass.
Word comes from Nature News that the NIH is dropping a proposed requirement for universities to disclose researchers' financial ties to industry on websites. This is a loss for patients, who may not be aware of their doctors' relationships with pharmaceutical companies and others who fund clinical trials, fellowships, conference junkets and other perks for physicians.
This post was inspired by the article "Patient Advocates: Flies in the Ointment of Evidenced Based Care" at the Health Affairs Blog. Patient advocacy and evidenced-based medicine are both intimately entwined with several matters in rheumatological care, but first a word about flies. Patient advocates probably are flies in the ointment, and there would certainly be no flies in a perfect world. But in a perfect world, we wouldn't be sick. In a perfect world, doctors could comprehend our pain.
A drug currently used for benign prostate problems is now being pushed for prostate cancer prevention. But the FDA warns there's evidence it may actually result in more advanced cancers.
There are a few things a man should think about seriously before rolling up his sleeve for the supposedly "simple" blood test. 'But here, prostate cancer screening is hawked in the same setting as the modern-day carnies pitching their slice-'em-and-dice-'em devices and inventions you only see at the state fair - "only at this price today!"
This interview with Molly Mettler is the third in a series of brief chats between CFAH president and founder, Jessie Gruman and experts - our CFAH William Ziff Fellows - who have devoted their careers to understanding and encouraging people's engagement in their health and health care.
Our country is politically polarized. The economy is teetering. Distrust of government and its employees is at an all-time high. Scientists are criticized as biased money-grubbers.
Evidence-based medicine, in other words, is population-based medicine. The care of any individual patient is based on the experiences of patients who have come before. And while to some extent that is unavoidable, it is also a great peril.
American health care treads a fine line between trying to serve the good of the many and the interests of the individual. But no one has yet figured out a cost-effective, yet humane, way to do both.
One major challenge for the new Patient Centered Outcomes Research Institute (PCORI) is to make good on its stated mission to improve health care by producing evidence "that comes from research guided by patients, caregivers and the broader health care community."
When my son Ben came down with a sore throat this past summer, he went to his doctor for antibiotics. Both agreed it sure sounded like strep, so without having to wait for the throat swab test results, Ben left the office with a prescription for antibiotics. But were they the appropriate treatment? Do all bugs need drugs?
The American people, long protected from the price of health care by insurance, are now forced to act as consumers. This situation is a free marketer's dream.
Patients rely on panels of experts to review and approve new treatments and products. The hope is that these experts are unbiased in their evaluations. Here, health care insiders debate whether there are enough conflict-free panelists to go around.
I was recently asked how evidence from clinical trials can possibly overcome powerful emotional stories of "saved lives." My answer: evidence-based medicine's supporters must fight anecdotes with anecdotes. Statistics show that, while some are saved, many people are temporarily or permanently injured as a result of screenings/testings - and their stories matter too.
, Otis Brawley MD, Executive VP of ACS and other experts on Twitter today at 2PM with ABC's @DrRichardBesser
for a Tweetchat about overtesting and overtreating in health care. Use hash tag #abcdrbchat
Josh Freeman, M.D., argues for research that looks at the patient as a whole. CFAH President Jessie Gruman cautions that if researchers are not advised, supported, and required to include the patient's perspective, it will not occur.
Steven Novella of the Science Based Medicine blog asks, 'If this is a pilot study only and we should not base any firm conclusions on the results, then why the press release?
Most of us would agree that doctors should not treat patients without their consent, except in special cases like emergency care for an unconscious patient. It’s not enough for doctors to ask “Is it OK with you if I do this?”
If I didn't object to receiving what I recognized as too much medical care, it should not be a surprise that, according to one study, many inappropriate tests and treatments are being provided more often, not less.
There is a large disparity of information across the medical world. If you consult 6 doctors, you’ll likely get 6 opinions about how to treat your cancer. And 5-year survivals may vary as much as 50%. This is inexcusable.
There are 30,000 Americans alive today with symptoms of HD, and an additional 200,000 are at risk...Generally, we see CER as an important priority to inform clinician decision making.
Shortly after we moved to Washington, DC, my wife and I purchased a basic home security system, the kind with a programmable keypad, multiple door alarms and a motion sensor. All things considered, it's hard to argue that the benefits of this preventive measure have outweighed its cumulative harms.
Twelve years ago, in its landmark study Crossing the Quality Chasm
, the Institute of Medicine (IOM) found that “the health care industry is plagued with overutilization of services, underutilization of services, and errors in health care practice.” In simple English, the IOM reported that health care was riddled with overuse, underuse and misuse of medical services.
Who would have thought that Twitter, this tiny aperture – a mere 140 characters – could connect me with so many smart, feisty, tough people who share, amplify, and improve on my efforts to spread carefully chosen health and health care content through their responses, retweets, modified tweets and acknowledgements?
Here’s why I tweet what I tweet...
What’s wrong with the following picture? Two medical researchers at a major academic center collaborate to study disease X. They come up with the research question, design the project, obtain grants, and collect data. Their results are published in a scientific journal and presented at several medical conferences. Based on this first study, the researchers start another cycle of idea generation, data generation, and publication.
Back when I was a medical student (in the Cretaceous Period) we were taught that someone once did a study comparing folic acid levels in the blood of cancer patients compared to the blood of healthy patients. The cancer patients had, on average, significantly lower folic acid levels. And the ones with the largest, fastest growing tumors tended to have the lowest folic acid levels. “Aha,” they thought. “Something about folic acid deficiency predisposes them to cancer. We should give folic acid to cancer patients.” Bad idea.
Robotic surgery systems are spreading so quickly across the U.S. and across the globe that trying to keep up with the news could become a fulltime beat. Here are just a few nuggets in an attempt to catch up on things you may have missed...
You may have seen the story the other day about a paper pointing to an association – not proof of cause – between heavy coffee consumption and higher death rates in people younger than 55. At last check, there were more than 170 stories about this study that turned up on a simple web search. But there was a point that didn’t make it into most stories...
My doctor can help me figure out what is right for me by considering my values and preferences and helping me to understand the scientific evidence.
It tickles me to report that I live with incurable cancer and I am expecting. I am expecting that the cancer will take its toll, that I will need to make choices about my health and care, that I will need the support of my family and that I will need resources.
The evil of "waiting" is well known among those with illnesses. We spend copious amounts of time in waiting rooms, exam rooms, lab offices. We wait for test results, scan results, to see if treatment is working. I'm in one of those waiting periods right now...
What's your assessment of the health news and information produced by the media these days? Is it accurate? Useful? Interesting? Improving, or worse than five years ago?
Last week, I was interviewed by Dr. Pat Salber and Gregg Mastors on their BlogTalkRadio show, This Week in Health Innovation, about patient-centered care, patient engagement, shared decision making and the cost/quality trade-offs involved, and what all of this means for health care delivery.
I'm concerned that the frantic drive toward evidence-based medicine as a strategy for quality improvement and cost reduction sets clinicians and patients up for a conflict about our shared picture of health care.
Current efforts to make health care more "patient-centered" include inviting some of us to advise on research priorities, care organization and delivery under the assumption that, as patients, we understand what patient-centered outcomes and care are. What do patients know about the inner workings of health care, after all?
Three key patient engagement themes emerged from this year's 'Diabetes + Innovation 2013' conference in Washington, D.C., organized by Joslin Diabetes Center at Harvard Medical School...
I read recently about a medical conference on breast reconstructive surgery following mastectomy, to which not one single Real Live Patient who had actually undergone breast reconstructive surgery following mastectomy was invited to participate...
Lately, the public's faith in the safety of prescription and over-the-counter drugs has been making me uneasy. Why do so many of us continue to purchase pills that are not effective in causing weight loss, swallow syrups that promise to cure diabetes, and fiddle with our medication-taking regimens?...
When we talk about a consistently clear pattern of news stories that exaggerate or emphasize benefits while minimizing or ignoring harms, we are talking about stories exactly like this one...
Twitter has figured prominently in the heated discussion about Emma and Bill Keller's respective editorials about Lisa Bonchek Adams. I have followed Lisa for a long time and greatly admire her thoughtful, highly personal tweets about the ups and downs of what it takes for her to face the challenges of metastatic breast cancer. In comparison, I am a different type of tweeter, posting a weekday stream of tweets aimed at addressing generally the subject that Lisa talks about so personally: finding and making the best possible use of health care...
The idea that knowing the price of our care will encourage us to act like wise consumers is a hugely popular topic on blogs, in editorials and in the news. But relying on access to price information to drive changes in our health care choices is full of false promises to both us and to those who think that by merely knowing the price, we will choose cheaper, better care...
Most professional health care stakeholders believe that the more we patients and caregivers know about our health and diseases, the better our outcomes will be. When faced with the facts about our health risks and dangerous habits, they think we will rationally change our behaviors and correct our misunderstandings. As a patient, I want to know: At what point do I know enough to reap these hypothetical benefits?
My patient, Mary, was a 28-year-old woman who had completed chemotherapy for stage II breast cancer. After discussing surveillance, frequency of follow-up and ASCO guidelines, I recommended against further testing or imaging. Mary was well aware of the evidence, but she had different plans...
How do we know which search results are true and which ones aren't? While you can find high-quality health information online, search results related to nutrition, fitness and preventive health vary widely in quality. And the actions we take (or don't take) as a result of the information we find can be hazardous...
Unfortunately, the nitty gritty of getting good care is not really newsworthy, unless we're talking about how poor it is. However, there are opportunities for journalists and writers to report "news you can use" that would be very helpful to many people, and there is a big gap in reporting on most of these necessary tasks...
I have offered before a few reasons for eligible patients to consider not getting screened for lung cancer. I concede, however, that reasonable people might conclude that the potential harms are outweighed by the benefit of reducing one's risk of dying by one-fifth. The next critical question that needs to be asked is: one-fifth of what?
For years, my colleagues on the Prepared Patient site have preached the importance of being an advocate for your own care. And they've noted that at times it is necessary to push back against doctors' recommendations if a suggested treatment does not seem right. I just returned from a visit to the U.K., which drove home the importance of that advice...
To those of us who have had a loved one succumb to cancer, who had to negotiate the frightening choice between the rock and the hard place, always holding out hope for another round of chemo...we know that reining in health care costs will mean more than just raising co-pays and lowering drug costs and funding more effective interventions. It will also mean quashing hope. And learning to tell ourselves the truth...
I'm impressed by how much we struggle with seemingly simple health decisions when faced with sorting through too much information. Every week we view diverse arrays of products with health, convenience and cosmetic claims competing for our attention. Think yogurt, Gatorade, running shoes, breakfast cereal...Given the ubiquity of such products and the swirl of marketing and science- or non-science-based information surrounding each, I'm wondering three things...
In the late 1990s, when the Institute of Medicine released their landmark Quality Chasm report saying that patients "should be given the necessary information and the opportunity to exercise the degree of control they choose over health care decisions that affect them," I don't think this is what they had in mind...
One thing seems to be sure in medicine: if we just wait long enough for excellent science to guide us ahead, things we trust as ironclad rules often change. Case in point...
My friend Jane is quite a perfectionist, at least usually. I was almost certain that if she was having work done on her kitchen, she would be getting competitive bids, asking for references and reviewing vendors. But not for her shoulder surgery. Perhaps we need a concise mantra for what it means to be a health care consumer...
As narrower insurance networks begin to limit where we can get our care and contradict the American notion of abundant choices, I thought about the Canadian health care system and rumors of its long waiting lists that grab U.S. headlines. Yet, narrow insurance networks, sky-high deductibles, co-insurance and co-pays are ways of controlling our medical expenditures. Instead of rationing with waiting lists, America rations with price...
When choosing a hospital, pay little attention to advertisements, testimonials from sick patients, boosterish stories based on press releases, or wisdom-of-the-crowd comments you find on consumer rating websites. Look for reports that measure a hospital's quality – only these can offer clues to the kind of care you might get...