Thyroid Cancer, Social Media, and Medicine — A Good Marriage
Social media is a tool that offers connections, collaboration, and an expansion of learning capabilities to the doctors, health professionals, and patients who choose to make use of it. For every specialty and survivor group out there, the chances are good that at least one blog or chat board exists to discuss the latest findings, debate current best practices and explore the fringe of what is possible. And for those particular diseases and medical topics that haven’t yet found their way to the web, it is a good bet that day is fast approaching. According to data from the Pew Research Center, the Washington, DC-based nonpartisan “fact tank” that provides information on issues, attitudes, and trends shaping America, 66 percent of Internet users look online for information about a specific disease or medical problem each year. Also, 55 percent of Internet users go online to find information on medical treatments and procedures. This is up from 47 percent in 2002. Although people continue to flock to the web for medical reasons in greater numbers every year, Pew also states that the Internet still only plays a supplemental role: “E-patients are likely to dip into social media activities related to health, but posting comments, reviews, or other health content are not yet mainstream online activities.” Regardless of its not-quite-prime-time status, social networking still allows people — specifically physicians and the patients they treat — an opportunity to engage their chosen community and connect with their colleagues. According to Spencer C. Payne, MD, assistant professor in the division of Rhinology & Sinus Surgery in the department of Otolaryngology—Head & Neck Surgery at the University of Virginia Health System, two of the more popular social media outlets — Facebook and Twitter — are a real boon to his department and allow him to cast a wider net when passing on information he finds noteworthy. “We can do a lot with our Facebook site,” Dr. Payne said. “Everything autolinks to our Twitter account, so all of our posts also appear on our Twitter feed. We post what our various members are doing, where they are giving lectures, and who is doing what types of surgery, as well as linking interesting articles that come across our computer screens. “I can link an article I find interesting to the Facebook site and target that information to patients that need to see it,” he said. “Social media is not only a way to communicate and publicize what your department or practice is doing, but considering how Google and other media outlets spider off of each other, it gives you more of a presence.” Patient perspective Social media also allows patients the ability to talk to one another, as well as the ability to dispel false information. Gary Bloom, executive director of the Thyroid Cancer Survivors’ Association, Inc. (ThyCa) (http://www.thyca.org/sept-ember.htm), said his organization has reaped huge benefits through the use of the social media. The Academy is currently teaming up with ThyCa to raise thyroid cancer awareness. “We originally developed out of a web-based bunch that met through a Yahoo! chat board and got to communicating by email and phone,” he said. “And as we have grown, just like the web, we have evolved.” ThyCa is a national nonprofit 501(c)(3) organization of thyroid cancer survivors, family members, and health care professionals dedicated to education, communication, support services, awareness for early detection, and thyroid cancer research fundraising and research grants. Bloom, a 16-year thyroid cancer survivor, explained that while ThyCa makes use of Facebook, Twitter, and Inspire to distribute its message to members, it also uses the tools to spread its message beyond the existing “fan base” to patients and doctors alike. “Every month, we do an e-newsletter, sending it out to our entire mailing list, as well as through the social media channels,” he said. “This ‘splintering’ effect creates more work for us because of all the distribution points, but that is not a complaint, it is simply the way of the world on the web. The analogy is that the Internet allows you onto the information superhighway, then you work down to the major artery roads and now I think we are down into the neighborhoods, which is where we need to be.” One of the “neighborhoods” Bloom said his organization has set up shop in is with physicians. He said that the discussions on the ThyCa site, like any other online forum, can go off the rails into pseudo-science from time to time. When this happens, moderators flag the issue and send it to him. From there, he gets in touch with a physician to get an evidence-based, best-practice answer. “We are diligent about identifying any problem issues and getting the answers,” he said. “If something is posted that a moderator thinks is too fringe or just plain wrong, they pass it on to me and I go out and get help. It is a delicate balance, but it is necessary. “We get physicians to answer these questions without burdening them with having to answer 100 questions a day,” he said. “By using me as a filter, the physicians we rely on are shielded from any of the unpleasantness that one might associate with an online medical forum.” Bloom said he is interested in involving physicians more in the everyday workings of the ThyCa site, possibly starting a monthly blog or Q&A, but he is going to investigate the options with the utmost amount of caution. “The last thing I would ever want to do is chew up a doctor’s time when he or she could be out saving lives or resting up,” he said. “When you’re off, you want to be off. I mean, I’ve always thought being a doctor must be an amazing job because you’re helping to save peoples lives, but do you love your job every day? “The point is there is every reason to believe that a doctor can hate his or her job every once in a while just like the rest of us,” he said. “Maybe Dr. Smith is getting audited today and she just doesn’t have the time to be on call 24/7 for people on our site to ask 1,000 questions. That just isn’t realistic.” Dr. Payne, who is also a member of the AAO-HNS Medical Informatics Committee, agreed with the sentiment, saying that while blogs often become another version of e-medicine, social media allows for a clearer message. “Social media lets you interact more personally with patients,” he said. “I think the downside of blogs is that, many times, patients are in desperate need of help, and come to those sites looking for a miracle cure. “Physicians need to be cautious, because as useful a tool as blogs can be, you can get trapped in bad situation, giving advice to a patient you’ve never even laid eyes on. You have to establish a distance between yourself and patients you’ve never met or seen.” Dr. Payne said that in today’s instant gratification society, email and social media can allow doctors to respond in an organized fashion on a timetable that works for them and allows better-quality follow-up. “The response we’ve seen here, and particularly the response I’ve seen from my patients, has been great,” he said. “Not only are you providing information and getting good communication, but when you put good information out there for your particular set of patients to read, you are building a relationship prior to them coming into the clinic.” Possibilities Bloom said he likes the idea of setting up an offshoot Facebook or Inspire ThyCa page just for physicians who want to discuss thyroid cancer issues. “It would be great to have a forum where a physician like Dr. Lisa Orloff wouldn’t be out there, exposed on our Facebook page, but would instead be able to come in and make submissions that other physicians could discuss without getting tapped by patients,” he said. “From there, if she wanted to publish a Marcus Welby-type blog about something on our forum, we could make sure no one could connect back to her personal site. “It would be great to get a physician’s take on novel treatments like robotic thyroidectomy through the arm and see what other physicians think about it before we published for the wider audience. It is a good idea, but we will just have to see what possibilities the future holds.” Bloom said he hopes he can strengthen the bond between physicians in the Academy and ThyCa, because it can only help patients out there looking for good answers to tough questions. He said he aspires to the getting a “Good Housekeeping seal” for the site, serving as a counterpoint to refute the bad information floating around out there. Using social media, he hopes to attract more hands-on physician participation on his site. “The nice thing with social media is that it allows physicians to contribute in line with their weird schedules,” he said. “If you’re up in the middle of the night doing dictation, and it strikes you that a particular treatment is good or bad, and you want to log on and say something about it, that’s an option. “That stimulates new discussion points, creates clarity and gets rid of confusion, which is the whole point of our site in the first place. With buy-in from the doctors, we might really have something there.” ThyCa Links Fine needle aspiration biopsy http://www.entnet.org/HealthInformation/fineNeedleAspiration.cfm ThyCa-Inspire Online Support Community: http://www.inspire.com/groups/thyca-thyroid-cancer-survivors-association/ Facebook Community: http://www.facebook.com/pages/THYCA/231492537404?ref=mf Twitter Community: http://twitter.com/#!/ThyCaInc e-mail Support Groups: http://www.thyca.org/email.htm

Social media is a tool that offers connections, collaboration, and an expansion of learning capabilities to the doctors, health professionals, and patients who choose to make use of it.
For every specialty and survivor group out there, the chances are good that at least one blog or chat board exists to discuss the latest findings, debate current best practices and explore the fringe of what is possible. And for those particular diseases and medical topics that haven’t yet found their way to the web, it is a good bet that day is fast approaching.
According to data from the Pew Research Center, the Washington, DC-based nonpartisan “fact tank” that provides information on issues, attitudes, and trends shaping America, 66 percent of Internet users look online for information about a specific disease or medical problem each year. Also, 55 percent of Internet users go online to find information on medical treatments and procedures. This is up from 47 percent in 2002. Although people continue to flock to the web for medical reasons in greater numbers every year, Pew also states that the Internet still only plays a supplemental role: “E-patients are likely to dip into social media activities related to health, but posting comments, reviews, or other health content are not yet mainstream online activities.”
Regardless of its not-quite-prime-time status, social networking still allows people — specifically physicians and the patients they treat — an opportunity to engage their chosen community and connect with their colleagues.
According to Spencer C. Payne, MD, assistant professor in the division of Rhinology & Sinus Surgery in the department of Otolaryngology—Head & Neck Surgery at the University of Virginia Health System, two of the more popular social media outlets — Facebook and Twitter — are a real boon to his department and allow him to cast a wider net when passing on information he finds noteworthy.
“We can do a lot with our Facebook site,” Dr. Payne said. “Everything autolinks to our Twitter account, so all of our posts also appear on our Twitter feed. We post what our various members are doing, where they are giving lectures, and who is doing what types of surgery, as well as linking interesting articles that come across our computer screens.
“I can link an article I find interesting to the Facebook site and target that information to patients that need to see it,” he said. “Social media is not only a way to communicate and publicize what your department or practice is doing, but considering how Google and other media outlets spider off of each other, it gives you more of a presence.”
Patient perspective
Social media also allows patients the ability to talk to one another, as well as the ability to dispel false information.
Gary Bloom, executive director of the Thyroid Cancer Survivors’ Association, Inc. (ThyCa) (http://www.thyca.org/sept-ember.htm), said his organization has reaped huge benefits through the use of the social media. The Academy is currently teaming up with ThyCa to raise thyroid cancer awareness.
“We originally developed out of a web-based bunch that met through a Yahoo! chat board and got to communicating by email and phone,” he said. “And as we have grown, just like the web, we have evolved.”
ThyCa is a national nonprofit 501(c)(3) organization of thyroid cancer survivors, family members, and health care professionals dedicated to education, communication, support services, awareness for early detection, and thyroid cancer research fundraising and research grants. Bloom, a 16-year thyroid cancer survivor, explained that while ThyCa makes use of Facebook, Twitter, and Inspire to distribute its message to members, it also uses the tools to spread its message beyond the existing “fan base” to patients and doctors alike.
“Every month, we do an e-newsletter, sending it out to our entire mailing list, as well as through the social media channels,” he said. “This ‘splintering’ effect creates more work for us because of all the distribution points, but that is not a complaint, it is simply the way of the world on the web. The analogy is that the Internet allows you onto the information superhighway, then you work down to the major artery roads and now I think we are down into the neighborhoods, which is where we need to be.”
One of the “neighborhoods” Bloom said his organization has set up shop in is with physicians. He said that the discussions on the ThyCa site, like any other online forum, can go off the rails into pseudo-science from time to time. When this happens, moderators flag the issue and send it to him. From there, he gets in touch with a physician to get an evidence-based, best-practice answer.
“We are diligent about identifying any problem issues and getting the answers,” he said. “If something is posted that a moderator thinks is too fringe or just plain wrong, they pass it on to me and I go out and get help. It is a delicate balance, but it is necessary.
“We get physicians to answer these questions without burdening them with having to answer 100 questions a day,” he said. “By using me as a filter, the physicians we rely on are shielded from any of the unpleasantness that one might associate with an online medical forum.”
Bloom said he is interested in involving physicians more in the everyday workings of the ThyCa site, possibly starting a monthly blog or Q&A, but he is going to investigate the options with the utmost amount of caution.
“The last thing I would ever want to do is chew up a doctor’s time when he or she could be out saving lives or resting up,” he said. “When you’re off, you want to be off. I mean, I’ve always thought being a doctor must be an amazing job because you’re helping to save peoples lives, but do you love your job every day?
“The point is there is every reason to believe that a doctor can hate his or her job every once in a while just like the rest of us,” he said. “Maybe Dr. Smith is getting audited today and she just doesn’t have the time to be on call 24/7 for people on our site to ask 1,000 questions. That just isn’t realistic.”
Dr. Payne, who is also a member of the AAO-HNS Medical Informatics Committee, agreed with the sentiment, saying that while blogs often become another version of e-medicine, social media allows for a clearer message.
“Social media lets you interact more personally with patients,” he said. “I think the downside of blogs is that, many times, patients are in desperate need of help, and come to those sites looking for a miracle cure.
“Physicians need to be cautious, because as useful a tool as blogs can be, you can get trapped in bad situation, giving advice to a patient you’ve never even laid eyes on. You have to establish a distance between yourself and patients you’ve never met or seen.”
Dr. Payne said that in today’s instant gratification society, email and social media can allow doctors to respond in an organized fashion on a timetable that works for them and allows better-quality follow-up.
“The response we’ve seen here, and particularly the response I’ve seen from my patients, has been great,” he said. “Not only are you providing information and getting good communication, but when you put good information out there for your particular set of patients to read, you are building a relationship prior to them coming into the clinic.”
Possibilities
Bloom said he likes the idea of setting up an offshoot Facebook or Inspire ThyCa page just for physicians who want to discuss thyroid cancer issues.
“It would be great to have a forum where a physician like Dr. Lisa Orloff wouldn’t be out there, exposed on our Facebook page, but would instead be able to come in and make submissions that other physicians could discuss without getting tapped by patients,” he said. “From there, if she wanted to publish a Marcus Welby-type blog about something on our forum, we could make sure no one could connect back to her personal site.
“It would be great to get a physician’s take on novel treatments like robotic thyroidectomy through the arm and see what other physicians think about it before we published for the wider audience. It is a good idea, but we will just have to see what possibilities the future holds.”
Bloom said he hopes he can strengthen the bond between physicians in the Academy and ThyCa, because it can only help patients out there looking for good answers to tough questions. He said he aspires to the getting a “Good Housekeeping seal” for the site, serving as a counterpoint to refute the bad information floating around out there. Using social media, he hopes to attract more hands-on physician participation on his site.
“The nice thing with social media is that it allows physicians to contribute in line with their weird schedules,” he said. “If you’re up in the middle of the night doing dictation, and it strikes you that a particular treatment is good or bad, and you want to log on and say something about it, that’s an option.
“That stimulates new discussion points, creates clarity and gets rid of confusion, which is the whole point of our site in the first place. With buy-in from the doctors, we might really have something there.”
Fine needle aspiration biopsy http://www.entnet.org/HealthInformation/fineNeedleAspiration.cfm
ThyCa-Inspire Online Support Community: http://www.inspire.com/groups/thyca-thyroid-cancer-survivors-association/
Facebook Community: http://www.facebook.com/pages/THYCA/231492537404?ref=mf
Twitter Community: http://twitter.com/#!/ThyCaInc
e-mail Support Groups: http://www.thyca.org/email.htm