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Media, Medicine and Society, Technology

Subjects for doctors to avoid when using social media

To post, or not to post? Sometimes, especially on Twitter, it’s a fine line to walk. Over on Wing of Zock, Bryan Vartabedian, MD, lists five subjects he tends to avoid, even at the risk of missing a good story.

Vartabedian explains why he chooses to err on the side of privacy:

Beer. I once spoke at a meeting out of town and caught up with some friends at the end of the day to visit and have a beer. I shared some details of my meetup and the particulars of the IPA I was enjoying. The following week in clinic a parent made a tongue-in-cheek comment on what I had shared. The comment reminded me that everyone’s watching and 140 characters doesn’t offer enough space to explain the why, or the time zone, of what I’m doing. So I now typically keep activities like beer consumption out of reproducible public view.

These and the other four are thoughts worth sharing.

Previously: Does age affect doctors’ adoption of technology?How a “culture of permission” prevents doctors from being active in social mediaAdvice for physicians when interacting with patients online and How can physicians manage their online persona? KevinMD offers guidance

Media, Medicine and Society, Public Health

Is medical information on Wikipedia a public-health problem?

Is medical information on Wikipedia a public-health problem?

2453225588_bd12f72712Anyone can edit Wikipedia, but who actually does? Weird Al Yankovic, for one, according to his song “White and Nerdy.” But while many citizen editors have good intentions in sharing and refining information in the public domain, subjects such as medical information require further oversight by qualified professionals. Beth Bengston, principal at Hale Advisors, writes in a piece for Ragan’s Health Care Communication News that Wikipedia’s unreliable information, often taken by readers as truth, poses a public health problem.

From the piece:

Those in the health care industry, especially drug manufacturers and the FDA, have a public health responsibility to play a role in helping to fix the inaccuracies and incomplete information on Wikipedia. Sure, there are some challenges—like the perception that the drug manufacturers have a conflict of interest or that getting anywhere near user-generated content will result in a visit from the FDA, but we should work toward common sense solutions.

Wikipedia has a role to play, as well. It needs to embrace drug manufacturers and assume they have the right intent in ensuring accurate information is available to the public. Some might argue that drug manufacturers in the past have been caught trying to game the system by removing damaging information about their products. But the beauty of Wikipedia is that the community will find and fix those self-serving changes.

Previously:  The importance of curation and communities when crowdsourcing clinical questionsA call to tap “latent creative” physicians in the medical communitySocial media advice from a physician-blogger and Advice for physicians when interacting with patients online
Photo by Mikeedesign

Addiction, Media, Research, Science

The disturbing trend of science by press release

The disturbing trend of science by press release

The Washington Post, Christian Science Monitor and Time were among the respected media outlets that recently covered the sensational alleged scientific finding that Oreos are as addictive as cocaine. Some journalists contacted me for my reaction, and I said I would get back to them after I read the study. I searched on PubMed and it wasn’t there. I looked through the “on line early” section of leading journals and it wasn’t there either. Neither could I find it in the published proceedings of any conferences.

Relapsing to a simpler approach, I Googled “Oreos and cocaine” and found the sole source of information available: A press release about an undergraduate research project at Connecticut College in New London, Connecticut. It is to the credit of the mentor on the project, Joseph Schroeder, PhD, that he’s teaching bright young people how to do science. I wish, however, he had also taught them something else: The role of peer-review in the promotion of scientific quality and credibility.

Putting out a sensational press release before experts in your field have had a chance to evaluate your scientific work is bad for science and bad for society

A leading scientist in the addiction field, Edythe London, PhD, of UCLA, was able to identify fatal flaws in the Oreo research even on the basis of the limited information in the press release. You can read Dr. London’s discussion of those problems if you wish, but my purpose here is to address a larger point: Putting out a sensational press release before experts in your field have had a chance to evaluate your scientific work is bad for science and bad for society.

The Oreo news stories were upsetting to people struggling with cocaine addiction as they trivialized the problem they face. Judging by the comments on many of the news websites covering the story, the study also fueled many people’s bias that taxpayer dollars are being wasted on studying silly topics. Granted, these harms are less serious than those that occurred when Andrew Wakefield, MD, intentionally deceived many journalists into reporting that the MMR vaccine caused autism, but that still doesn’t make it good practice to report initial findings as facts in the media before one’s work has been peer-reviewed.

Credibility-straining press releases are unfortunately becoming more common in science. And even when a finding is real, a press release can distort its meaning. For example, the recent Qesem cave discovery of fossils from homo sapiens was considered a genuine achievement by experts in physical anthropology and was published in a peer-reviewed journal, but the accompanying press release made wild claims about human evolution that were nowhere to be found in the article. When the shocking claims in that press release were disseminated by journalists, the public was misled and the science was cheapened.

Sensationalized press releases about scientific findings unfortunately can be much more widely disseminated today than in prior eras. Science journalists once had the time and resources to do more shoe leather reporting, conduct follow-up interviews with the scientific team, and interview independent scientists to obtain a careful critique of the findings. But today, as Paul Costello, chief communication officer for Stanford’s medical school, told the Columbia Journalism Review, the “shift to new media Web site traffic” is putting added pressure on reporters, leading some to cut corners in the name of more copy, “often writing right off press releases, even at the good papers.”

If science journalists can no longer be depended on to sort the wheat from the chaff, scientists are going to have to assume more responsibility for self-restraint when they release findings to the press. All of us would like to believe that we never make mistakes in our scientific work. All of us are capable of becoming overly enthusiastic about a pet theory before our colleagues have subjected it to criticism. And all of us can be tempted to hype our findings as a way to draw some gratifying attention to ourselves. But when we give in to those human frailties in our interactions with the media, we undermine our collective credibility and may also harm members of the public who act on the assumption that our claims have been rigorously evaluated.

Addiction expert Keith Humphreys, PhD, is a professor of psychiatry and behavioral sciences at Stanford and a career research scientist at the Palo Alto VA. He recently completed a one-year stint as a senior advisor in the Office of National Drug Control Policy in Washington.

Previously: The influence of medical press releases on news coverage quality and The problem with “science by press conference”

Media, Research, Science, Stanford News

But is it news? How the Nobel Prize transformed "noteworthy" into "newsworthy"

But is it news? How the Nobel Prize transformed "noteworthy" into "newsworthy"

Stanford Professor Michael Levitt speaks to reporters from his campus home after his Nobel Prize in Chemistry was announced.It’s no secret that Stanford structural biologist Michael Levitt, PhD, won the 2013 Nobel Prize in Chemistry last week for his contributions to the understanding, via computational simulation and molecular modeling, of the immense molecules that we carbon-based lifeforms are made of. This is tremendously valuable work.

But if you’re ever so slightly prone to glazing over at terms such as “computational simulation and molecular modeling,” then I have a real secret to share with you.

I received an e-mail earlier this year from Levitt, with whom I hadn’t met during my five years as a science writer here. He’d just had a paper accepted in the journal Structure and was wondering whether our office might want to publicize it via a news release. “This is my best work since 1976,” he wrote.

Like many studies that pass before my eyes, this was a work of first-rate science. Levitt and his associates had solved the structure of the most complex members of an important class of proteins called chaperonins.

But trying to explain the significance of this finding, let alone Levitt’s math- and computation-heavy methodology, to lay readers via an 800-word news release was a nonstarter. I replied with what I hoped was a respectful explanation of why I couldn’t write a release on the study: The fact that a scientific work is noteworthy doesn’t necessarily make it newsworthy. The working press, we have learned, often require evidence of a direct, easily understood connection between breaking research and its implications for readers in the here-and-now. While understandable, this can make basic research a tough sell.

“Clearly this is a huge methodological advance,” I wrote. “But… it necessarily contains a nested sequence of concepts and references to key molecules. Any of these, alone, would be tough to explain… The attention span of the hyperkinetic, overworked editors and reporters who serve as surrogate readers for [our target nonscientific audience] is simply too short for us to pull that off…”

My message far exceeded the word-count limit of any release I might have scratched together.

Levitt’s response was gracious, serene and practically immediate: “Hi, Bruce. Your note was terrific and oh so helpful. [I have] some trial elevator-pitch paragraphs to try on you, more from the interest of the exercise than for any real desire to get publicity.” And sure enough, there followed two concise, if still somewhat terminologically freighted, paragraphs on his new work and its implications.

I responded: “Hi, Michael. I very much appreciate your efforts.” And, with the sincerest of good intentions, I proceeded to rewrite his paragraphs, substituting my snappy constructions for his honest, earnest explications. I suggested he could consider either concentrating on his new findings or focus on the methods he’d devised to get them. Maybe he’ll find himself in an elevator with a grantor or donor someday, I thought, and here I am helping him find les mots justes for that occasion.

He didn’t write back, but from this parched soil grew a beautiful flower.

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Media, Science

A reminder to those who write about research: "Candor is essential, but so is perspective"

A reminder to those who write about research: "Candor is essential, but so is perspective"

I’m a few days late to this, but a recent Health News Review blog entry shares the views of a cancer survivor who took issue with the headline on a press release about a new cancer study. The headline highlighted a possible link between lymphoma treatment and stomach-cancer risk, and reading it made this woman feel “like someone punched me in the gut.” As she wrote to blogger Gary Schwitzer:

Putting such a headline in a publication available to the lay public creates an unnecessary threat of anxiety to patients who’ve already suffered a great deal.

I’m not a medical professional and don’t pretend to have the background necessary to understand these things, but it seems as though it’s unnecessarily scary.

As someone who writes about medical research for a living, I took note of her comments. Though it’s my job to report on study findings – even the potentially scary ones – I need to be mindful of how readers will interpret what I’m writing and what they’ll walk away with. “Scientific candor is essential, but so is perspective,” the woman (rightly) notes.

Previously: What made science blogger Ed Yong “a better, more empathetic” journalist and Want to become a better science communicator? Try explaining science to a child

Behavioral Science, Media, Science

A look at the "Serious Scientist Myth"

In an essay today on SciLogs, author Matt Shipman continues a thread bucking what he calls the “Serious Scientist Myth” – the idea that “serious” scientists dislike speaking to news reporters about their work and hold their interview-willing colleagues in low regard.

Shipman, a science writer and public information officer at North Carolina State University, translates peer-reviewed studies on this topic into reader-friendly form – as he suggests that many senior, or simply confident, researchers can do when speaking to the press. And he has fun with another stereotype, this one about journalists:

So, here’s what I want to know: Where did the Serious Scientist Myth come from?

This isn’t a cute narrative trick, where I ask a question at the top of the story and then answer the question for my readers. I have no idea what the answer is. Instead, I’ll explain why I’m asking the question.

Read more here.

Previously: Bryan Vartabedian: Physicians are public affairs professionals, The influence of medical press releases on news coverage quality and The problem with “science by press conference”

Autism, In the News, Media, Medicine and Literature, Mental Health

The Reason I Jump: Insights on autism and communication

As I write this, I’m keenly aware that communication is one of the most common, and perhaps most difficult, things we do. That’s why I was both humbled and heartened when I read about Naoki Higashida’s book The Reason I Jump on Biographile today.

The book is described as a “stunningly clear-eyed look into the experiences of a boy with autism.” But, as explained in the review, many of the themes Higashida addresses in his book, “reveal truths about communication and connection that all humans should contemplate.”

In the Biographile interview, Higashida, who was 13 when he wrote the book, describes hard-to-grasp, prickly concepts such as communicating with compassion, and why good communication is hard work but worth the effort, with bell-like clarity. I cannot wait to get my hands on the book.

From the review:

Some people tend to assume that individuals with all kinds of disabilities have a less than mature understanding of language. But in many cases, even when speech and language production are impaired, understanding is not. Higashida explains to readers that baby talk is disheartening for him to hear as a young man. He encourages people not to talk down to people with autism, or anyone. “True compassion is about not bruising the other person’s self respect,” he writes, revealing not only an expert command of language but also wisdom beyond his years.

To share his experiences and his fiction with the world, and even to communicate basic needs to his family and caretakers, he painstakingly spells out the words on alphabet grids while others transcribe. He admits learning to communicate independently was hard work and at times, he felt “utterly beaten” by the process. But, Higashida reminds us, “to live my life as a human being, nothing is more important than being able to express myself […] it’s about getting across to other people what I need and what I need them to understand.”

Holly MacCormick is a writing intern in the medical school’s Office of Communication & Public Affairs. She is a graduate student in ecology and evolutionary biology at University of California-Santa Cruz.

Previously: More Stanford findings on the autistic brainA mother’s story on what she learned from her autistic sonUsing music to improve communication skills in children with neurodevelopmental disorders and Stanford study reveals why human voices are less rewarding for kids with autism

Cancer, Media, Medical Apps, Technology, Videos

Weekend viewing: A roundup of TED talks on health, fitness and happiness

Weekend viewing: A roundup of TED talks on health, fitness and happiness

In case you haven’t seen it, the Greatist has a nice roundup of top TED Talks on fitness, health and happiness. If, like me, you look for practical tips on how to apply medical research and technology tools to create a healthier life, you might be interested to browse this selection over the weekend.

Among the videos highlighted is a 2011 talk by Daniel Kraft, MD, titled “Medicine’s future? There’s an app for that.” Kraft, an inventor and Stanford School of Medicine-trained physician, is an NIH-funded faculty member affiliated with the Stanford. In this TED talk he discusses apps to track quantified-self metrics and tools to improve personalized medicine. He also surveys ways medical professionals are–or soon will be–using technologies such as robotic surgery, nanomedicine, virtual patient visits, and crowdsourcing data on an exponential scale to address major challenges in health care today.

From the video:

By leveraging these technologies together, I think we’ll enter a new era that I like to call Stage Zero Medicine. And as a cancer doctor, I’m looking forward to being out of a job.

Previously: Why networks of “micro-experts” are a valuable resource for the medical communityBig Data in Biomedicine videos now available onlineBertalan Meskó discusses how mobile technologies can improve the delivery of health care and Stanford surgeon uses robot to increase precision, reduce complications of head and neck procedures
Video by TED

Global Health, Health Disparities, In the News, Media, Microbiology, Public Health

A journalist's experience with tuberculosis, the "greatest infectious killer in human history"

I’m a bit late in finding it, but The Global Mail published a fascinating and sobering feature article last week about the  heartbreaking toll of drug-resistant tuberculosis in parts of the developing world. Journalist Jo Chandler traveled to Papua New Guinea in 2011 to tell the personal stories of those affected with the disease, which is rampant in the country, including a woman named Edna who lost her 19-year-old daughter, Susan:

Tuberculosis retains the distinction of being the greatest infectious killer in human history, claiming an estimated billion lives in the past 200 years. Its toll today is still second only to HIV (and it is the major killer of people with HIV). In 2011, 8.7 million people fell sick with TB. Edna’s daughter was one of 1.4 million who died of it that year.

The story is illustrated with beautiful, disturbing photographs of villagers with the disease that alone are enough to keep me reading. But then Chandler’s narrative takes a riveting, disturbing turn:

Sometime in those few days, somewhere, someone coughed or sneezed or sang or laughed, spraying a cloud of invisible Mycobacterium tuberculosis into the air, and I inhaled. By the time my ride out finally materialises on the tarmac and I click my heels for home, it seems I have a stowaway. Eighteen months later, in March 2013, I am diagnosed with multidrug-resistant tuberculosis (MDR TB). Let’s call it accidental immersion journalism.

I digest all this as I recover at home, still a little shocked when I hear the phrase “I’ve got TB” come from my mouth – and still adjusting to the horrified response it often elicits. My body is sore from surgery, and weakened and assailed by the mindblowing volume and variety of drugs coursing through unhappy veins. My partner is gentle and my children attentive and my parents worried. I’m profoundly grateful to every doctor, every nurse, and for every jab and tablet and almost every bloody cannula.

I have notebooks full of stories of TB patients who die seeing none of it.

Chandler’s story first attracted my interest because of an article I wrote early this year about how the bacterium hides out in the bone marrow of patients, only to resurface years or decades later. But I found I couldn’t tear myself away from Chandler’s comparison of the treatment that she’s receiving at home in Australia (including four months of IV drugs) with that available to infected people in neighboring Papua New Guinea. And like most readers, I suspect, I found myself deeply embarrassed of my lack of awareness of this killer.

Previously: Tuberculosis may remain dormant in bone marrow stem cells of infected patients, Researchers show way to reduce prevalence, spread of TB in former Soviet Union and Coming soon: a faster, cheaper more accurate tuberculosis test

Autoimmune Disease, Media, Nutrition, Pediatrics, Research, Stanford News

Join Stanford pediatric gastroenterologist for Twitter chat on celiac disease research

Join Stanford pediatric gastroenterologist for Twitter chat on celiac disease research

On Thursday, Stanford pediatric gastroenterologist KT Park, MD, will participate in a Twitter chat about his latest research on celiac disease. The chat will be hosted by the American Gastroenterological Association and begins at 12 noon Pacific Time. Follow the conversation and ask questions using the hashtag #CeliacChat.

Park and colleagues at Stanford published findings (subscription required) in the latest issue of Clinical Gastroenterology and Hepatology showing that screening adolescents who are either symptomatic or at high-risk for celiac disease is more cost-effective than universal screening. Researchers compared both approaches in an effort to determine if one method would prove better at preventing bone loss and non-traumatic hip and vertebral fractures in celiac patients. Park, co-lead study author, discussed the team’s findings in a American Gastroenterological Association release:

Our study showed that conducting systematic screening of patients at risk of celiac disease is more cost effective than screening all adolescents for the disease. We determined that adopting a universal screening strategy fails to increase the long-term quality of life of the population as a whole, and introduces potential harm from unnecessary endoscopic evaluations of healthy individuals.

There is an ongoing clinical concern in the GI community that the current practice of celiac disease screening misses a considerable proportion of asymptomatic patients due to the frequency of silent or inactive disease. However, implementing universal screening to prevent bone disease and subsequent non-traumatic fractures alone in undiagnosed or untreated celiac disease patients does not appear to be a viable health policy alternative to the standard of care.

Screening only those at risk was more cost effective, by a margin of $60, in preventing bone loss and fractures among patients with undiagnosed or subclinical disease. However, researchers noted that future analysis of risk and cost of other potential consequences of undiagnosed patients, such as anemia, infertility and malignancy, could alter the cost-effectiveness of universal screening for celiac disease.

Previously: Living the gluten-free life, From frustration to foundation: Embracing a diagnosis of celiac disease and Gluten: The “new diet villain?”
Photo by Wellcome Images

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