When the cure for lymphoma is discovered, the world may have Ashton Kutcher and Larry King to thank.
Here's why: Anas Younes, MD, Professor of Medicine at the University of Texas MD Anderson Cancer Center, was watching Larry King Live in early 2009 when he first learned of a contest between the actor and CNN to reach the then-unfathomable milestone of having one million Twitter followers.
“I got curious about what Twitter was,” Dr. Younes said. “And that's how I got into it.”
Recognizing the potential of communicating with people he would never meet, Dr. Younes set up a Twitter account and got to work.
His goal is not to beat Kutcher, King, or anybody else for social media bragging rights. He has a bigger target in mind: “My goal is to get every single lymphoma patient following me. Then when we have some innovative clinical trials, at a click of a button, we can get everybody interested, enroll patients in two or three months, and move on to the next question.”
To engage and inform his followers, Dr. Younes tweets about cancer and other health topics almost every day. He writes on MD Anderson's Cancerwise blog about once a month. He has appeared in four YouTube videos (http://bit.ly/cwsQZz, http://bit.ly/b51d8U, http://bit.ly/9Bl71b, http://bit.ly/bVFbqY) and two iTune webcasts that promoted MD Anderson's clinical trials related to lymphoma.
His pioneering role, however, is being the first oncologist to create a patient community on Facebook. That is where Dr. Younes's “fans” gather to find out what he knows about lymphoma (see box).
And he is getting the results he wants: “There is not a single week that I don't have a few potential referrals, either through Facebook, Twitter, or other social media. For one of our trials, most of the people who contacted us said they watched the YouTube video, and that has resulted in a rapid enrollment.”
In his first year on Facebook, Dr. Younes posted 633 links to medical articles published in scientific and general media outlets. He averages two Facebook posts and seven tweets a day, almost all of which include a link to a medical article.
Although his social media activity is spread throughout the day, he estimates that he spends at least 30 minutes per day posting links that he wants his followers to know about. It is a big time commitment, but connecting with potential clinical trial participants is a big priority.
“My guess is that people who say ‘I don't have time for social media’ don't know what it is,” he says.
Lymphoma expert and Professor of Medicine at MD Anderson Cancer Center. I tweet on medicine, cancer, and health.
About 1700 followers, about 4300 tweets to date.
Facebook Mission Statement:
Build a community of motivated people to share information on cancer, lymphoma, and other health care topics and to encourage participation in innovative clinical trials to improve the cure rate of cancer.
Think Facebook is Trivial? Read This!
Facebook, the most popular social networking website in the US, allows users to create an individual page, invite people to join them as “friends,” send messages to their friends, and update their personal profiles to notify friends about themselves.
Originally developed by and for college students, Facebook is easily mocked for the inane ways in which it is sometimes used. However, many major corporations, universities, and organizations—and one lymphoma expert—are skillfully using Facebook as a communication hub to reach their professional goals.
Four months after he started using Twitter, Dr. Younes wanted to add Facebook so that he could share information about medicine and cancer with more people—and not be limited to Twitter's 140-character limit. He originally used a standard Facebook page, in which he accepted “friend requests” from people interested in the information he provided.
“After consultation with colleagues, MD Anderson communication office staff, and some of my followers, though, the site was changed to allow ‘fans’ to follow me rather than ‘friends,’” he explained. “This allowed my followers, some of whom are patients of mine, to keep their privacy while giving them the opportunity to read and comment on my posts.”
Near the one-year anniversary of his Facebook page, Dr. Younes posted a recap of his social media activity in the previous year. The following is an excerpt from that post and the responses it generated from his Facebook fans. The post and comments have been edited for length; they can be read in their entirety at http://bit.ly/aRTVNY
Anas Younes, MD: “This effort not only provides credible educational information to the general public, but also has been a successful tool to promote participation with innovative clinical trials at our center.
“Making myself available through social media and posting my email address on this Facebook page gave access to many people around the world to ask questions, and in many cases resulted in referrals of patients who are interested in participating in clinical trials. Every week I get emails from patients and families around the world asking for help. This is a lot of work for me, but I consider it a good public service.
“My goal is to reach out to every patient with lymphoma. Over the past year, 617 individuals followed this page, and of course not all of them are lymphoma patients.
“This year, it is expected that 74,000 new patients will be diagnosed with lymphoma (both Hodgkin and non-Hodgkin) in the US. That means, I will have to reach out to 73,400 more individuals!
“Well, if you do not know me, I would like to assure you that I think this goal is achievable. I just have to keep working on it. But I would also like you to help me achieve this goal.
“Best wishes to all of you.”
LM: “I am one of those people who was not a lymphoma pt (breast ca dx 4 yrs ago). I have found your posts informative and helpful…you're the reason I found out about a FDA huber needle recall that directly affected me. Thank you for taking the leap and using social media….I know many docs are terrified of liability. You're an example of how you can use it and avoid those pitfalls. Now that I know your goal to get to all with lymphoma I will help!!”
LSA: “My daughter (age 16) has been fighting Hodgkins since Aug '08 and relapsed in June following auto SCT in March. We've exhausted treatment protocols at our pediatric hospital and are considering treatment centers outside of Chicago, our home base. Anas, we'd love to get your POV on treatment options for our daughter… thank you for all the info!!!”
Dr. Younes: “Liz—Please send me an email with details, and will be happy to help.”
NPM: “I, for one, am thankful that I have found you on Facebook. I am in remission today but I know that I won't always stay here so the more knowledge I have, the better my outcome will be when that day arrives.”
CG: “Dr. Younes is awesome to keep us informed this way and has been so willing to take email questions! I looked at your caringbridge page. Your daughter is beautiful. I'm sure there is a treatment that will kick the hodge to the curb for good! Blessings!”
JAM: “Dr. Younes is a consummate professional and a compassionate man. He wanted to help me, but couldn't (insur. problem). However, he did not let me leave Anderson empty-handed and hopeless. So, for that I am grateful. Keep up the good work.”
August 3 at 8:08am
KM: “Dr. Younes is without a doubt the most wonderful doctor in the world. He is kind, compassionate, extremely intelligent and cares for his patients as individuals and not just a ‘number.’ I truly believe he is going to find the cure for lymphoma….in the meantime, he will never let you give up hope!!!”
Dr. Younes: “Thanks Katie. We are working on finding better treatments and cure for Hodgkin and non-Hodgkin lymphoma. But I need your help and the help of others to spread the word and encourage patients to come participate in clinical trials. The faster we complete the studies, the faster we reach our goal.”