by Dianna Douglas

Forty years ago, discussing your plans to donate your organs if you were to become brain dead was considered extremely poor taste.  “People didn’t talk about death and demise in polite company,” said Allen Anderson, MD, associate professor of medicine. He’s director of the advanced heart failure program at the University of Chicago Medicine, and has seen public attitudes about organ donation gradually shift away from macabre fascination and horror in the 1970s, when the concept of brain death was still evolving. “Even after organ donation became more viable, people had a hard time talking about this,” he said.

Not anymore. As of yesterday, Facebook has added an “organ donation” status update page to every account in the U.S. and U.K. These organ donation conversations are public like never before.

Families were once likely to object to someone offering herself up as a donor. Many people feared that the hospital staff wouldn’t do enough to save a dying patient if they already had plans to harvest her organs, or that the surgery to remove the organs would inflict more pain on the patient. For a long time, becoming an organ donor upon death remained a private wish.

“Medicine has progressed and we’ve come to understand brain death. Now, organ donation is not so charged,” Anderson said. In fact, 90% of the public supports organ donation in theory. But when pressed, somewhere between 30-40% of people refuse to turn over the organs of a loved one.

“We always suggest that organ donors discuss their decision with family and loved ones,” said Michael Millis, MD, professor of surgery and section chief for transplant. These conversations serve two purposes: the family knows their wishes, and there is a domino effect when people see others doing something that they once found creepy, or something that they had never considered.

“Organ donation saves lives and eases the suffering of thousands of families,” Millis said.  “Anything that increases awareness of organ donation is helpful.”

Currently, 57% of the people in northern Illinois and northwest Indiana are registered as an organ donor. “We have a good system for getting people to register,” said David Bosch, Gift of Hope communications director. “But we need 90% registered.”

Gift of Hope arranges organ allocation in northern Illinois and northwest Indiana. Bosch still combats persistent myths about organ donation, mostly through educational events in which organ donors and organ recipients share their experiences with the community.

“We’ve had positive media stories, and will sometimes see spikes in visits to our website and donor registrations,” Bosch said. He’s hoping that the Facebook bump will be more permanent. “Most of our outreach is asking each donor to tell two friends, and asking them to tell two more friends. The Facebook attention is powerful because the audience is a billion people.”

There are currently 790 patients on the waitlist for an organ transplant at the University of Chicago Medicine. Many will get organs this year, some will get better without a transplant, and a few of them will die waiting.

The organ shortage is so severe, Anderson says, that even if every person in the country who became brain dead in a hospital gave up their organs, it wouldn’t be enough. “If you commanded every suitable donor to be utilized for donation, we would still have a shortage,” Anderson said. For example, there have only been 1,100 donors in the United States this year. But 73,000 active candidates are waiting. An average of 18 of them die every day.

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By Matt Wood

Some people use social media strictly for personal purposes. Others use it to tout their expertise on a subject or to market a business. Many use it for a little of both. The choice is usually a matter of personal preference and ambition, but for physicians using social media to discuss medical issues and communicate with others, it’s much more complicated.

BMJ recently published an article on the difficulties physicians face trying to maintain a distinction between personal and professional lives on social media, as they navigate the legal and ethical issues involved discussing medicine and interacting with the public online. I spoke to some physicians at the University of Chicago Medicine who are avid users of social media and asked them why they decided to start using social media, and how they draw the line between the personal and the professional online.

Vineet Arora, MD, associate professor of medicine, writes a blog focused on medical education called FutureDocs and runs a lively Twitter account (@FutureDocs). She’s written about why she started blogging and how social media has helped advance her career, and said in our interview, “My main reason for getting started was to stay current and learn what others were thinking about.”

This soon turned to her contributing the discussion as well. “You learn that you can also contribute to the discussion, dispel myths and connect with people who share your interests and can help you advance your thinking,” she said.

Jeffrey Matthews, MD, surgeon in chief and chairman of the Department of Surgery, echoed this sentiment about participating in the medical discussion online. “I started using Twitter (@JBMatthews) as an experiment to celebrate and publicize some of the goings on in the Department of Surgery,” he said.  “But it soon morphed into a way to also comment on interesting news stories that affect our institution, our department, the field of surgery and broader issues of science intersecting with politics.”

Social media has other professional benefits for physicians, especially those starting their careers. Andrew Nickels, MD, a resident with an interest in allergy/immunology and medical ethics, said he also started using Twitter (@EthicalAllergy) for knowledge sharing, but finds value in it as a networking tool as well. “Social media allows me to establish a network of colleagues that provide me with worthwhile content,” he said.

The biggest challenge for physicians using social media, and one that the doctors I spoke to said scares many of their colleagues away, is the risk of running afoul of HIPAA regulations by violating patient privacy or posting inappropriate content online. In March, JAMA published a research letter reporting that most medical licensing boards they surveyed had received at least one complaint about unprofessional online behavior by physicians, such as sexual misconduct, prescribing medicine without an established clinical relationship and misrepresenting credentials.

Ves Dimov, MD, an allergist/immunologist and assistant professor of pediatrics and medicine said his role as a social media user is to help other physicians use it effectively in their practice. “Everybody is aware of the risks, but we need to show them how to do it and provide examples of best practice,” he said. “Highlighting only the negatives of social media use in medicine is like teaching medical students only with “Morbidity and Mortality” conferences. We need to discuss positive outcomes too.”

With 9,000 followers,  his Twitter account (@DrVes) was ranked among the top 6 most influential people in Chicago and among the top 3 in medicine worldwide. He has written about how doctors can use social media as an extension of their natural communication skills and to provide valuable information to patients. He said the payoff to using social media outweighs risks if certain simple rules are observed. “I’ve been using social media for eight years now, and it’s been a tremendously positive experience,” he said.

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By Dianna Douglas

Maybe you’re the type of person to see a tiny nonsensical phrase in the credits of a movie and actually dig into it online. Be careful—you might find yourself sucked into a mystery story. Over the course of a week, you get a text message from someone you’ve been mindlessly Googling, you get an email with a riddle, and you find a chatroom with hundreds of people asking questions about clues they’ve found. You pick up more hints in this puzzle—on your phone, from YouTube, in your inbox, on a major website like Amazon. By the time you have solved the mystery, you know that the entire cloak-and-dagger game was orchestrated by the movie studio to create buzz. And it worked.

Instead of marketing the next summer blockbuster, Melissa Gilliam, MD, professor of obstetrics and gynecology and pediatrics at the University of Chicago Medicine, wants to deploy these tools to keep urban kids from getting pregnant or contracting infections. If this goal hardly distinguishes her from a million other people working with disadvantaged youth, her methodology certainly does: she is inviting them to play a secretive, science-fiction transmedia game on their computers to get them to rethink contraception, STIs and the cycle of poverty.

“Playing games can shape social attitudes and transform behaviors,” Gilliam said. “But I am not certain if anyone has tried to use a transmedia game in this context with urban youth.”

First, an explanation: A transmedia game is a story that unfolds across multiple digital technologies. It is usually designed by a video game, movie, or television show creator for that subset of the audience who wants to take the experience out of the screen and into everyday life.

This transmedia game is being orchestrated by Gilliam and her colleague Patrick Jagoda, PhD, Mellon Postdoctoral Fellow of New Media in the Department of English at the University of Chicago. It will launch on March 12th, and will be live for two weeks. They and their team of game developers will drop clues online and in the real world during that time, leading young players on a scavenger hunt for health and science knowledge and letting the players create content for each other.

The first hint in the game is already being planted at various places across Chicago. The developers are also drawing players into the game with Facebook and Google advertisements. The ads will direct these curious people to a website. Right now, the website is just a countdown clock to March 12. When the game starts, it will be a hub of clues.

(The plot and characters are under wraps until it’s over, so don’t look here for spoilers.)

“We don’t know who will play the game,” said Ainsley Sutherland, the research coordinator for the project. “But it was designed by 14 to 17 year olds, for their friends and peers.”

The research group plans to collect demographic information, to survey the people who play, and to monitor the online forum to see what they learn by playing. Gilliam is hopeful that the game will reach the target audience of poor, urban young people of color.

“I hope they realize that their course doesn’t have to be determined for them,” Gilliam said. By helping the young players think critically about health disparities and increase their health literacy in an augmented reality game, Gilliam hopes they’ll feel empowered to choose their sexual path in real life.

“Sexual and reproductive health is about your sense of relationships, and where you fit in the world. Young people who reach their full potential know what dangers they face and what hinders them. And they learn to reach beyond it.”

Will they play? Will they run away at the faintest whiff of being educated by an academic medical center? Will they think more critically about their social and cultural pressures to make poor reproductive choices?

And the million dollar question: Will their sexual behaviors change? read more

By Matt Wood

It’s hard to avoid consumer advertising for prescription medications. Flip open a magazine and you’re likely to see a picture of a middle-aged couple, sitting in matching bathtubs, hawking erectile dysfunction pills. Turn on the TV and you’ll hear an actor rattling off a long list of scary-sounding side effects from a drug to help stop smoking. Direct-to-consumer pharmaceutical advertising is the fastest growing form of marketing, rising 330 percent from 1996-2005. About $4.3 billion was spent in the United States in 2009 on drug ads, and companies have expanded their marketing efforts to social media.

A recent study in the Journal of Medical Internet Research found that all of the top ten global pharmaceutical companies now use Facebook, Twitter, blogs, and other sites to market their products, and eight out of the top ten have their own mobile applications. Of the top ten highest grossing drugs of 2009, nine of them have dedicated websites, Facebook pages or Twitter accounts, and disturbingly, illegal online retailers were also selling nine of the ten top drugs via social media.

With this deluge of legal and illegal marketing pitches, how does someone know what to believe when they look for medical information online? The FDA has provided general guidance to the pharmaceutical industry (PDF) for responding to unsolicited requests for information, but consumers are on their own. “The problem with the medical information online is that it’s not well regulated. In many cases it’s not easy to see who is behind a particular website and what their agenda is,” said Ves Dimov, MD, assistant professor of pediatrics and medicine at the University of Chicago Medicine.

Dimov is an allergist and immunologist who has been a leading advocate of using social media in medicine. He is ranked as one of the top three social media influencers in medicine by Klout.com, a service that measures a user’s influence on various social networks, and his AllergyCases.org website is one of the most popular online allergy and immunology resources, with more than one million page views. He says that the solution to wading through the flood of suspect medical information online is for physicians to provide their own stream of trusted, verifiable information.

“In an ideal world, every single physician in the country should have his or her own presence online via a Twitter feed, blog or a Facebook page,” he said. “Studies show that we trust our friends’ opinions more than Google results, so if somebody you know posts a link to an article you’re much more likely to click on it. Patients’ own doctors can provide quick reference links to high quality information online, such as key recommendations, new studies, etc.”

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