Tag Archives: Twitter

Epilepsy, Seizures and Twitter

Twitter can be a great platform for disseminating reliable medical advice and information. Unfortunately, it can also spread misinformation and downright offensive commentary about medical conditions and the people who live with them. That sad fact was illustrated in a study conducted by neurology researchers at Dalhousie University, who sought to investigate stigma regarding epilepsy on Twitter. A preliminary 2-day analysis showed that the word “epilepsy” mainly brought up informational content, so for 7 days they searched only for tweets containing the words “seizure,” “seizures,” “seize,” and “seizing.”

 Among 1,504 such tweets analyzed, nearly a third (32%) were categorized as “metaphorical,” such as “My blackberry just had a seizure.” Another 31% were personal accounts, such as “I feel so helpless when my dog has a seizure.” Just 12% contained informative, factual information about seizures, while 9% were ridicule/jokes, including “What do you do when someone’s having a seizure in the bathtub? … Throw in a load of laundry.” Others were categorized as miscellaneous, opinion, and advice seeking, accounting for 8%, 6%, and 2% of tweets, respectively.

A majority of the metaphorical comments were derogatory in nature. Taken together with the ridicule/joke tweets, these negative comments accounted for 41% of the sample. “This is a big problem…Even though we may think we’re doing a good job of reducing stigma, we’re not,” Dr. Paula M. Brna said in an interview during the American Epilepsy Society (AES) Meeting, where she presented the study findings in a poster.

Indeed, the “laundry” joke was re-tweeted an “astonishing” 77 times in a 24-hour period, Dr. Brna and her associates wrote in their paper, which was posted online the week of the AES meeting.

There were a few tweets that spoke out against the offensive tweets. One tweet said “Why do people joke about epilepsy and seizures? Do they joke about cancer? Attach your brain 2 a car battery & see how funny it is!”

The authors wrote, “The online voice of those speaking out against such negative stereotypes and disparaging remarks needs to be stronger. This emphasizes a need for improved epilepsy education and motivation for people with epilepsy as the foundation to improve public knowledge and behavior.”

-Miriam E. Tucker (@MiriamETucker on Twitter)

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Filed under Family Medicine, Internal Medicine, Neurology and Neurological Surgery, Pediatrics, Primary care, Psychiatry, Uncategorized

Mayo Clinic Takes on Facebook

On the same day that a Wall St. Journal article speculated that Facebook could be worth $100 billion by the time it goes public early next year (as has been rumored), the Mayo Clinic announced that it has launched its own online social networking community.

Via Koreshky at Wikimedia Commons

And it may be the first medical provider to do so. The Clinic says it knows of no other health system that has a social network.

The week-old community doesn’t have a catchy name, but it is populated with all the features of Mayo Clinic’s already robust online presence. The Clinic says it has the “most popular medical provider channel on YouTube, nearly 200,000 followers on Twitter and more than 53,000 connections on Facebook.”  It also has a library of condition-specific podcasts and a blog highlighting medical news from the Clinic.

The networking site will be “a place for community members to share information, support and understanding,” the Clinic says.

Essentially, the network aggregates all the Clinic videos, podcasts, and news and allows for interactive discussions on topics ranging from arthritis to travel to the various clinic sites. Just like on Facebook, users can “like” a topic or add their own comments to a post.

With so many chat rooms and discussion boards out there–not to mention that advocacy groups and individuals use Facebook to solicit and give advice on health conditions and share experiences–will the Mayo network attract many users?  The Clinic says that some 1,000 people have joined in the first week of operation. It’s open to any and all comers, not just Mayo patients or their families.

Presumably, the ultimate number of users won’t be of great importance to the Clinic, although it is potentially a great marketing tool. The Clinic also doesn’t have to worry about satisfying venture capitalists or stockholders.

But maybe Facebook should be worried.

—Alicia Ault (on Twitter @aliciaault)

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Filed under Alternative and Complementary Medicine, Blognosis, IMNG, Internal Medicine, Practice Trends

Social Media Lack Privacy, a Problem for Psychiatrists

Many psychiatrists of, ahem, a certain age (say, over 30) have been caught by surprise by the reach of online and social media. With the explosion in use of the Internet, e-mail, Google, Facebook, Twitter, LinkedIn, and many other ways to find out information about someone, there’s no such thing as privacy any more. That creates a new set of modern problems for psychiatrists who walk a fine line between building a therapeutic alliance with patients and keeping a professional distance.

Image captured by flickr user smemom87.

I sat in on a fascinating group discussion at the annual meeting of the American College of Psychiatrists to hear how professionals are grappling with these issues. Look for a more detailed report soon in Clinical Psychiatry News. What surprised me is that even some very young psychiatrists who grew up so immersed in online and social media that they seem like part of the natural environment have been surprised by the professional ramifications of the long reach that these tools give to patients.

Some of the challenges are old problems in a new form, it seems. Setting limits on patients’ e-mail contact with psychiatrists is similar to setting limits on phone contact in some ways, but magnified. The Internet and e-mail can be both helpful and problematic in their work, psychiatrists said. The biggest potential land mines are in the social media. What happens when a patient wants to “Friend” a psychiatrist who is on Facebook? No matter how the psychiatrist responds, there’s grist for the psychoanalytic mill. Transference becomes a bigger issue. Even using the highest privacy settings, non-Friend visitors to your page can glean information about you, your “Friends,” and potentially your family. Perhaps not surprisingly, only a handful of psychiatrists in the room said they were on Facebook. And Internet dating? Look out.

Does that mean psychiatrists must be technological hermits, never to enjoy the interconnectedness that social media supply to everyone else in society?

These are all weighty questions that usually have no right or wrong answer. The American Association of Directors of Psychiatry Residency Training (AADPRT) just released new curricula to guide psychiatrists-in-training in discussing these issues, so that they can anticipate the potential consequences of the decisions they make about use of online tools and social media. See my full story for details.

The curricula are available only to AADPRT members, though some of the resources in them may be made available to the general public in the future, said AADPRT President Dr. Sheldon Benjamin. Meanwhile, you can hear him discuss these topics in an AADPRT podcast interview with Dr. Sandra M. DeJong, chair of the Association’s Task Force on Professionalism and the Internet.

I’d love to hear from clinicians of any specialty who are reading this (but especially psychiatrists) — do you use social media? Are they worth the potential professional problems? And will you Friend me? Leave a comment, and let us know.

— Sherry Boschert

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Filed under Family Medicine, Internal Medicine, Pediatrics, Practice Trends, Psychiatry, Uncategorized

For Parents Who Worry about Newborns and Cyberspace

Registration packets were bulkier than usual at the American Academy of Pediatrics national meeting this year because they contained complimentary copies of two new books that comprised an interesting juxtaposition. Both were published by the Academy.

First is the updated, second edition of Heading Home with Your Newborn: From Birth to Reality (September 2010). Two pediatricians who also are moms (Dr. Laura A. Jana and Dr. Jennifer Shu) offer information and advice aimed especially at first-time parents who may be feeling curious, anxious, inadequate, and just plain tired as they bring their new baby home and enter a life of day-to-day care for this new little being.

The book includes fresh sections on vaccines, choosing a child care provider, early learning, car seats, safe sleep, cord blood, postpartum depression, vitamin D, organic formulas, disposable vs. cloth diapers, newborn hearing screening, what to keep in your medicine cabinet, and more.

It’s a lot for new parents to take in. And that’s only the beginning — in the blink of an eye, parents will be moving on to the second book, CyberSafe: Protecting and Empowering Kids in the Digital World of Texting, Gaming, and Social Media (October 2010). Every young kid today is what author and pediatrician Dr. Gwenn Schurgin O’Keeffe calls a “digital native” — someone who has never known a world without the Internet, social networking sites, mobile communication technologies, gaming, virtual worlds, texting, and sexting.

The teasing and bullying that many kids experience in the “real world” has followed them into cyberspace. One in five kids will experience online abuse by the time they are in high school, Dr. O’Keeffe notes. I’ve seen this first-hand since my nephews got me onto Facebook and allowed me to Friend them. (Digital immigrant, c’est moi.) I’ve seen some kids taunting and bullying others in their posts.

But you know what? I’ve also seen kids stick up for each other, perhaps more so online than they would have in person. And when one kid vented about his frustrating family and said he would run away from home, his peers rallied around him and encouraged him to think more calmly.

Parents need to know that no matter where their kids will be, they need to be involved, whether it’s in school, on the playground, or on their cellphones, MySpace or Twitter. CyberSafe can help them and their kids be cyber-smart.

–Sherry Boschert (@sherryboschert on Twitter)

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Video of the Week: Despite CV Risks, Meridia Offers Help to the Right Patient

Researchers  involved in the Sibutramine and the Role of Obesity Management in Relation to Cardiovascular Disease in Overweight and Obese Patients (SCOUT) trial have concluded that long-term use of the weight loss drug sibutramine (Meridia) was not associated with an increased risk of death; however, the drug was associated with a significantly increased risk of nonfatal myocardial infarctions and strokes among overweight and obese people with preexisting cardiovascular conditions. The findings were presented at the International Congress on Obesity in Stockholm, and then published in the September 1 issue of the New England Journal of Medicine. Read our story by Elizabeth Mechcatie here.

Mitchel Zoler spoke with Dr. Stephan Rössner of the obesity unit at the Karolinska Institute in Stockholm, who was an invited discussant for the SCOUT presentation. The drug is still a good option for patients without cardiovascular problems, he said.  Sibutramine can be considered for patients with eating disorders, sleep apnea or arthritis, who need additional help losing  or maintaining weight, provided that cardiovascular risk factors are monitored, he added.

Check back here or at Internal Medicine News next week, when Elizabeth Mechcatie will be covering the FDA Advisory Committee meeting on sibutramine September 15-16. You can follow Elizabeth’s coverage on Twitter, @ElizMech.

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Filed under Cardiovascular Medicine, Drug And Device Safety, Endocrinology, Diabetes, and Metabolism, Family Medicine, IMNG, Internal Medicine, Video

Cancer As Chronic Disease

Courtesy of Flicker user Mel B (creative commons)

Courtesy of Flicker user Mel B (creative commons)

from the annual meeting of the American Society of Clinical Oncology in Orlando

It’s a rare treat for the lone medical reporter to get together with others of our kind.  I had dinner tonight with the other EGMN reporters and editors covering ASCO.  We can’t help ourselves and we mostly talk shop.  There was a lot of great discussion.

My oncology mentor and editor of The Oncology Report, Jane MacNeil, brought up the idea of cancer as a chronic disease.  The idea was pretty thought changing for me.  I’ve been covering oncology for 3 years now and cut my teeth on patient/survivor care stories. The topic is still an important one to me.

Still, all of this time, as I’ve been thinking about the issues and problems of who cares for cancer survivors—some types of cancers with increasingly long survival—-it hadn’t occurred to me that it might be possible to start to think about cancer as a chronic disease.  I admit that for some types of cancers, the idea seems laughable but for other types…well, it seems kind of plausible.

So, I put it out there to all of you ASCO folks: can or will we start thinking of cancer as a chronic disease that is managed?

Also, I’d like to give a big shout out to some of my new Twitter friends that I found through #ASCO: @drsteventucker, @djsampson, @amarantoblook, @MaverickNY, @PharmacistScott, and of course my good buddy @MedReporter.

—Kerri Wachter (on Twitter: @knwachter)

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Feeling Part of Something Bigger

Photo by K. Wachter

Photo by K. Wachter

From the annual meeting of the American Society of Clinical Oncology in Orlando, Fla.

This is my third year covering the annual ASCO meeting.  It’s still overwhelming and adrenaline-producing with more than 30,000 attendees from around the world.

But I’m also starting to feel a part of it.  I’ve followed some of the same studies every year, watching a small part of a specific type of cancer become better understood or witnessing better and longer responses with some very innovative therapies. For example, one of the first stories that I covered at ASCO was an investigational vaccine for glioblastoma multiforme aimed at epidermal growth factor receptor variant III (EGFRvIII) .  Today I caught up on the latest results and the immune response is still looking impressive (abstract 2021).

It made me realize that we all—patients, researchers, physicians, nurses, other health professionals, and even medical writers—have an important part to play in fighting cancer.

—Kerri Wachter (follow me at ASCO on Twitter @knwachter, #ASCO)

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Drug Makers Tweeting About Their Tweatments?

From the Waggener Edstrom Worldwide webinar on the pharmaceutical industry’s hopes for, and fears about, tapping into social media in Washington, D.C.

The pharmaceutical industry, like many other sectors seeking a way to stay viable in a world where customers are becoming ever more elusive (um, like maybe journalism?), is dipping its toes into the brave new world of social media.  At a small meeting room at the Madison Hotel today, a group of attendees heavy on public relations and drug company employees brainstormed about the possibilities of using social networking sites like Facebook and Twitter to get the word out about their products, or maybe about a particular condition, and connect with the end users: physicians and patients.

Tweety bird courtesy of Flickr Creative Commons user aussiegall.

Tweety bird courtesy of Flickr Creative Commons user aussiegall.

There’s a big catch for drug makers, however.  The Food and Drug Administration hasn’t really determined where these communications fit into its regulatory scheme.  Mark Gaydos, a senior director of regulatory affairs at Sanofi-Aventis, said he is heading a somewhat informal task force of representatives from 5 drug makers seeking to create voluntary guidelines on the industry’s use of social media.  The companies have already been talking with the FDA’s division of drug marketing, advertising and communications about their efforts, Mr. Gaydos said.

“We’re trying to influence the environment, shape the policy in some way because the guidelines aren’t out there and it’s really preventing a lot of companies from participating, so we’re hoping we can move that along,” he said. Drug makers know their customers — patients and physicians — are increasingly on-line, and that’s where they need to be, too, said Mr. Gaydos, who expressed his own opinions, not those of Sanofi-Aventis.

“The traditional massive sales force approach is really not doing the job anymore,” he said.

But sending out “Viva Viagra” tweets every hour on a Friday afternoon or friending a Parkinson’s disease patient group on Facebook present perils as well.  Drug makers don’t want to be seen as predatory. 

“A company has to tread lightly because they don’t want to be perceived as using social media venue as just another way to promote,” Mr. Gaydos said. “People don’t want to go and be part of an on-line discussion and feel that they are basically just tools of the industry’s efforts to promote the product.”

Some drug makers have already begun Tweeting, including Astra-Zeneca, Boehringer Ingelheim, Novartis,  and Vertex.  Only Boehringer seems to be fairly active; even so, it’s Tweeted only 33 times since November.

Companies seem to be using the technology to follow, not be followed, said Jenny Moede, who advises drug companies on digital media for Weggener Edstrom.

With profits down, blockbusters like Lipitor coming off patent in just a few years, and a barren product pipeline, it would be surprising to see drug makers passively follow for too much longer.

— Alicia Ault

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