All quotes mentioned in the handouts were taken from the Profiles in Oncology Social Media http://journals.lww.com/oncology-times/pages/collectiondetails.aspx?TopicalCollectionId=11 “ It can be used for amazing social good!” “ Those saying it’s a loss of time, don’t know what they talk about” Power of Twitter Krupali Tejura MD-Radiation Oncologist (aka @krupali) “ I have a patient support group called Ruby Red Slippers, and at one of our meetings, I heard a young patient with Stage IV cancer say she wanted to go to the Ellen show (Ellen Degeneres' talk show). I went on the Ellen website but I could not get any tickets. So I put it out on Twitter, and a follower of mine who is a breast cancer survivor who works in the industry—she's a makeup artist—got two VIP tickets so I could take my patient. When I first met this girl, she was metastatic and couldn't walk because her knee was riddled with cancer. But by the time we went to the show, she was walking on her own, which was amazing. That showed me the power of Twitter to fulfill a dream”. “ When you throw something out to the world, and believe in it, someone will listen”. Douglas Blayney, MD, ASCO President “ I do not receive an extraordinary number of comments, but when I meet people, they often seem to have read my blog posts.” “ I have learned some important things through Twitter that I don't think I would have picked up in other ways.”
Anas Younes, MD - @DrAnasYounes- Professor of Medicine at MD Anderson Cancer Center “ I felt that using social media was necessary to communicate directly with patients, caregivers, and doctors to provide them with timely updates on our high-priority clinical trials and to provide them with a credible source of information on lymphoma and cancer.” Time spent on social media Naoto T. Ueno, MD, PhD - @teamoncology “ I may spend 30 to 40 minutes a day tweeting, but I don't sit down and spend 30 or 40 minutes at a time. I type real fast and I can read fast, and I can digest things fairly fast. So, every time I see something, if it's interesting, I will tweet. And when I find information on Twitter that is worth spreading, I will retweet with my comments. Also, if I attend a good seminar which is in the public domain, just to keep my memory going on, I tweet. Rather than taking notes, I tweet.” “ I tweet for two populations—Japanese and people in the US. I notice that most people in the US do not pay attention to Twitter content in the evening, whereas in Japan, blog and Internet activity skyrockets in the late evening. So I have a guideline to what I do: I tweet from 6 pm to 8 am in Japanese; and from 11 am to about 6 pm, I tweet only in English. 8 am to 11 am is tricky because people in Japan are awake—they stay up very late for Twitter activity—so I have to communicate in both languages. (There is a 14-hour time difference between Japan and Houston during the summer.)” Douglas Blayney, MD, ASCO President “ My schedule right now does not permit a regular posting schedule, and I don't have the energy to devote to it right now. Each post takes about an hour or two.” Raymond DuBois, MD, PhD, Cancer Researcher, MD Anderson Cancer Center “ Since I started to use Twitter in April 2009, I've had about 400 tweets. It is something I try to do once or twice a day, and I spend probably as much as 30 minutes a day on it.” Anas Younes, MD - @DrAnasYounes- Professor of Medicine at MD Anderson Cancer Center He averages two Facebook posts and seven tweets a day, almost all of which include a link to a medical article. He estimates that he spends at least 30 minutes per day posting links that he wants his followers to know about. “ My guess is that people who say ‘I don't have time for social media’ don't know what it is,” he says.”
How to do it Douglas Blayney, MD, ASCO President “ I chose Blogspot ( www.blogger.com ) because it was easy to get started and the formatting was appealing to me”. Raymond DuBois, MD, PhD, Cancer Researcher, MD Anderson Cancer Center “ I follow about 190 people. I follow the other cancer centers. I follow Oncology Times , as well as Nature and Science . There are some advocacy organizations that I follow, along with The New York Times and other general interest sources.” Raymond DuBois, MD, PhD, Cancer Researcher, MD Anderson Cancer Center “ You have to be very selective about the people you choose to follow because that determines the information that you're going to gain or lose.” “ The technical aspects of it are pretty minor. Anybody who uses e-mail or any other form of electronic data transmission should be able to manage the social media.” “ Another concern that people might have is that when you release information on the Internet, everybody is reading your thoughts and it could lead to some other bad outcome. I have not experienced that.” “ Twitter is one of the easiest forms of social media to use.” Strategy Dr. Naoto Ueno (aka @teamoncology ): “ There is a strategy in my tweeting, which is that I don't tweet only about cancer. I like to eat, so I pay attention to food—not just the menu, but sometimes I tweet about ingredients and the region the food is from. I like techno-music, and I have a certain group I like; those tweets are mostly in Japanese. Every time I travel, if I see anything interesting, I will tweet about it.” Anas Younes, MD - @DrAnasYounes- Professor of Medicine at MD Anderson Cancer Center “ 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.” First oncologist to create a patient community on Facebook. Following/Friending Dr. Naoto Ueno (aka @teamoncology ): “ I follow only about 350 people. It's not that I am not interested in all the other people, but I want to really go through the whole timeline (of tweets by each person I follow) to get a sense of what's going on with my Twitter friends. So I am careful about who I pick to follow. Interests Hashtags Dr. Naoto Ueno (aka @teamoncology ): “ I have a lot of hashtags prescheduled to search, so I get a lot of information. I follow hash tags by cancers and I have my own hash tags that I created. I quickly go through them every day. I have 20 in front of me now.” Blogging Dr. Naoto Ueno (aka @teamoncology ): “ I have a personal blog about patient empowerment, but it's in Japanese. I've been blogging probably three or four years. How it started is that I am the chair of the sister institution relationship between Tokyo Oncology Consortium and MD Anderson.
A key search and connect feature of twitter is the hashtag. A hashtag is a word (or group of words mashed together) preceded by a hash symbol (#). In each tweet about that topic, the author inserts the hashtag so that anyone who searches for that hashtag can read the tweet. A hash tag is simply a way for people to search for tweets that have a common topic. For example, if you search on #emcc2011 you'll get a list of tweets related to the congress. What you won't get are tweets that say &quot;I was at emcc2011 yesterday&quot; because “emcc2011&quot; isn't preceded by the hashtag. hash tags allow you to create communities of people interested in the same topic by making it easier for them to find and share info related to it. Even if you do not have a Twitter account, go to Twitter.com and search on #prostatecancer, for example, to find dozens of recent tweets on that topic. Not all Twitter authors use hashtags, so the list of tweets you find on the #prostatecancer search will not include all the information about that topic being shared on Twitter. Hashtags are often used by people, who are attending a conference. For example, check out today #emcc2011 to find tweets by ECCO-ESMO congress.
Blogging Krupali Tejura MD-Radiation Oncologist (aka @krupali) “ I've been a blogger since about 2003 when I was a resident. I did blogging anonymously because I didn't know the rules for blogging with my residency program or the institution.” “… And I did a little travel blog so those who couldn't travel because they were on chemo or radiation could read the blog and sort of travel with me.” “ Especially during sad cases, it is sort of a catharsis for me. I'm basically writing for myself and sharing that with the world. I don't really have an audience; I'm just writing for me.” Douglas Blayney, MD, ASCO President “ ASCO started the EHR website with the goal of getting members more involved with sharing their experiences with electronic health records. …….” As I was using our electronic health record here at University of Michigan, I would have observations that are not worthy of formal scientific publication, but might be helpful to others because they are anecdotes from a real user.” Personal blog: “I wanted to start writing about things other than electronic health records.”….” I also find it interesting living in a small college town in the Midwest, so I post some of my writings and observations about Ann Arbor.” “ I use the blog as a catalog of interesting readings that I've come across, and I also use it perhaps as a first draft of papers that I might write some time, a first draft of ideas Connecting in social networks Naoto T. Ueno, MD, PhD - @teamoncology “ I have many friends through Twitter and blogging who I have not physically met, including a colleague ( @propacil ) with whom I have written an opinion article in which we compare US and Japanese health care. We are planning to submit it to The New York Times or The Journal of the American Medical Association .” Hashtags Hashtags are often used in conferences so that participants can put their tweets under a common heading. You may check #ASCO10 where there are thousands of tweets who tweeted at and after the conference or here at #emcc2011 today. Hashtags are also used for tweetchats that is fixed time online meetings among people sharing same interests. The tweetchat is an open conversation you may drop in and out as you want. You may look for interesting hashtags to follow at The Healthcare Hashtag project
Regina Holliday;s Medical Advocacy Blog http://reginaholliday.blogspot.com/2011/09/victim-of-game.html The Walking Gallery http://reginaholliday.blogspot.com/2011/06/welcome-to-walking-gallery.html Dave deBronkart: LET PATIENTS HELP! http://www.ted.com/talks/dave_debronkart_meet_e_patient_dave.html
Ecco slides v2
How Health Professionals & Patient Groups Are Using Social Media
Why Does it Matter? <ul><li>Your patients and peers are there </li></ul><ul><li>Connect & learn from peers & experts </li></ul><ul><li>It DOES NOT take much time </li></ul><ul><li>You get value </li></ul>
How to Do it? <ul><li>Start slowly one social network at a time </li></ul><ul><li>Select carefully who to follow, friend </li></ul><ul><li>First listen carefully </li></ul><ul><li>Then interact </li></ul><ul><li>Engage in conversation with your followers </li></ul><ul><li>Behave online as you would offline, with extra care </li></ul>
Tendencies <ul><li>Ι ncreased adoption of SM </li></ul><ul><li>Participation becomes routine </li></ul><ul><li>Multi-platform participation </li></ul><ul><li>Need for social engaging environment in healthcare with user defined privacy including PHR </li></ul>
Thank you for listening Kathi Apostolidis Breast Cancer & Patient Rights Advocate blog: http://epatientgr.wordpress.com twitter: www.twitter.com/kgapo , www.twitter.com/#opnHealth facebook: www.facebook.com/kathiapostolidis www.facebook.com/#opnhealth Linked IN: http://www.linked in.com /in/kathiapostolidis