Social Media, Physicians, and Patients with Multiple Sclerosis: A Guide for the Perplexed

2. Social Media, Physicians, and Patients with Multiple Sclerosis: A Guide for the Perplexed Andrew N. Wilner, MD, FACP, FAAN NeurohospitalistDepartment of Neurology Lawrence and Memorial Hospital New London, Connecticut

3. Please Answer the Following Questions • Are you “LinkedIn?” • Did you “Friend” anyone today? • Have you posted questions for your fellow “Sermoans”? • Did you “tweet” this week?

4. Did You Answer Yes? If you answered “Yes” to all 4 questions, you can skip this presentation…if not, please continue…

5. The use of web-based technology to facilitate interaction with others. Social Media

6. “Media for social interaction, using highly accessible and scalable publishing techniques. Social media uses web-based technologies to turn communication into interactive dialogues…a blending of technology and social interaction for the co-creation of value.” –Wikipedia What Is Social Media? Wikipedia, The Free Encyclopedia. Social media. Available at: http://en.wikipedia.org/wiki/Social_media.

7. Blogs Facebook, MySpace LinkedIn Sermo Twitter Wikis YouTube Flickr, SmugMug Social Media—A Few Examples

8. With permission from Solis B, et al. The conversation prism. Available at: http://www.theconversationprism.com.

9. Nicholas Kristof—New York Times Columnist, February 2010 “I really think that [social media] is part of the way that we are going to need to continue to engage audiences, and I can engage dead white men in my column and then I can engage teenyboppers with my Facebook page…We need to try to evolve, so that’s one reason why I do shoot these videos for the [New York] Times’ website, why I blog, why I Twitter, why I Facebook, why I have a YouTube channel.” Williams A. Nicholas Kristof: newspaper columnist, globehopping dinosaur. Time Out New York. February 18-24, 2010. Available at: http://newyork.timeout.com/articles/i-new-york/82860/nicholas-kristof-bold-questions.

10. Evolution of Health Information Sharing • Used to be 1-way (physician control) • Now “interactive” • Physician-patient • Patient-physician • Patients-patient

11. How Health Information Was Shared MD Patient Slide courtesy of Dr. Bryan Vartabedian.

12. How Health Information Is Shared MD ePatient

13. How Health Information Is Shared ePatients ePatient

14. Patient Blog on MS—Looks Official… Learning to live with multiple sclerosis. Available at: http://learningtolivewithms.blogspot.com/.

15. The Social Media RevolutionHow Is Its Use in Adults Growing? 2005 2009 Lenhart A. Adult and social network websites. January 14, 2009. Pew Internet & American Life Project. Available at: http://pewinternet.org/Reports/2009/Adults-and-Social-Network-Websites.aspx.

16. Percentage of Adults Who Look Online for Health Information 61% Fox S. The social life of health information. January 14, 2009. Pew Internet & American Life Project. Available at: http://pewinternet.org/~/media//Files/Reports/2009/PIP_Health_2009.pdf.

17. The scale of health information sharing has evolved from the doctor, patient, family, and friends to MILLIONS OF PEOPLE IN THE WORLD… Health Information Sharing

18. If Social Media Is a Fad, It’s a BIG One! • Facebook—500 million users1 • Twitter—165 million users (90 million tweets/day)2 • LinkedIn—80 million users3 1. Facebook. Press room: people on Facebook. Available at: http://www.facebook.com/press/info.php?statistics. 2. Twitter blog. #newtwitterceo. October 4, 2010. Available at: http://blog.twitter.com/2010/10/newtwitterceo.html. 3. LinkedIn. Available at: http://www.linkedin.com/.

19. Patient with MS Communicates to the WORLD on YouTube Multiple sclerosis: CCSVI & liberation procedure NEWS. RADIO SHOW. THE END OF MS. Available at: http://www.youtube.com/watch?v=_z8qJrH7VMU.

20. Twitter—The News in 140 Characters! Multiple sclerosis: news and information on multiple sclerosis (MS). Available at: http://multiplesclerosis.comxa.com/.

21. MS Patient on CCSVI Abbreviation: CCSVI, chronic cerebrospinal venous insufficiency. Wheelchair kamikaze: the rants, ruminations, and reflections of a mad MS patient. Available at: http://www.wheelchairkamikaze.com/.

22. MS Society Communicates Through News Media MS Society comments on CCSVI announcement live on Sky News. Available at: http://www.youtube.com/watch?v=46Siaot1HL4.

23. American Academy of Neurology Public Webinar on CCSVI • 50 journalists on-site • 4000 public attendees online who submitted >700 questions • http://www.youtube.com/watch?v=W2niOdMGsJg Abbreviation: CCSVI, chronic cerebrospinal venous insufficiency. American Academy of Neurology National MS Society. CCSVI Web Forum Part 1 of 14. April 2010. Available at: http://www.youtube.com/watch?v=W2niOdMGsJg.

24. US Hospitals on YouTube and Twitter Bennett E. Hospital social network data and charts. Available at: http://ebennett.org/hsnl/data/.

25. Positives Patients will find more information Patients will share information with each other Negatives Patients will find more misinformation Patients will share more misinformation with each other How Will Social Media Impact My Patient Care?

26. Where Are the Doctors?MDs in Social Media Space • Late adopters • Time/impatience • Concerns over privacy, liability, and image • Physician usage of social media had grown 50% in the previous year, according to a June 2009 survey1 1. Massachusetts Medical Society. Social networking 101 for physicians. Available at: http://www.massmed.org/Content/NavigationMenu2/ContinuingEducationEvents/NewCourses/SocialNetworking101forPhysicians/ManagingTheRisksOfFacebookTwitterAndOtherSocialMedia/Managing_The_Risks_O.htm.

27. Advantages of Social Media • Wider audience • Low cost • Instantaneous communication • Easy updating • Interactive—“Web 2.0” • Self-education

28. 4: Individuals – email lists 3: Closed networks – MySpace, Facebook 2: Open networks – blogs, feeds, YouTube 1: Mainstream media – press, influencers Armano D. Influence ripples. Available at: http://darmano.typepad.com.

29. Patient education Promote your practice Recruit patients for clinical trials Cultivate professional relationships How You Can Use Social Media to Improve Your Practice

30. Blog Put a stake in the ground Slide courtesy of Dr. Bryan Vartabedian.

31. Do Physicians Have an Obligation to Be in the Online Space? KevinMD.com. Available at: http://www.kevinmd.com/blog/2009/08/delayed-vaccine-schedule-dangerous.html.

32. Visit This Blog's Front Page Neuro Notes Zamboni "Venous Insufficiency" Theory of Multiple Sclerosis−Red Flags Warn of Thin Ice Andrew Wilner, MD, Neurology, 11:28PM Apr 14, 2010 Here in Canada, ice hockey is big sport. But everyone knows you don't go skating on the pond when the ice is thin. At the request of the National Multiple Sclerosis (MS) Society, the AAN hosted a prime time press conference to create a venue where the controversial theory that "chronic cerebrospinal venous insufficiency" (CCSVI) is the etiology of MS could be discussed by its leading proponent, Paolo Zamboni, MD, Director, Vascular Diseases Center, University of Ferrara, Italy, Robert Zivadinov, MD, PhD, Director of the Buffalo Neuroimaging Analysis Center, Buffalo, NY, Andrew Common, MD, Radiologist in Chief, St. Michaels Hospital, University of Toronto, Ontario, CA, and Aaron Miller, MD, Professor of Neurology and Director of the MS Center at Mount Sinai, NY, NY, and Chief Medical Officer of the National MS Society. Medscape Blogs. Neuro Notes. Zamboni "venous insufficiency" theory of multiple sclerosis−red flags warn of thin ice. Available at: http://boards.medscape.com/forums?128@659.e8MxapbrysT@.29fccf6a!comment=1.

33. Blog Slide courtesy of Dr. Bryan Vartabedian.

34. MedPage Today Medscape Sermo Twitter YouTube Opportunities for Self-Education

35. Physician Education Projects In Knowledge. Multiple sclerosis tool kit: diagnosing and understanding cognitive dysfunction. Available at: http://www.projectsinknowledge.com/neurology/multiple-sclerosis_1.cfm?jn=2008.

36. Disadvantages of Social Media • Information chaos! • Misinformation abounds • Communication “too easy”−just a click… • Lack of patient/physician boundaries… • “Private” information becomes “public”

37. Do Not Practice Medicine! “New communication technologies must never replace the crucial interpersonal contacts that are the very basis of the patient-physician relationship.” –AMA Guidelines for Physician-Patient Electronic Communications American Medical Association. Guidelines for physician-patient electronic communications. Available at: http://www.ama-assn.org/ama/pub/about-ama/our-people/member-groups-sections/young-physicians-section/advocacy-resources/guidelines-physician-patient-electronic-communications.shtml.

38. Staying Safe on Social Networks • Never discuss patients by name • Do not communicate with patients regarding clinical care • Block patients from personal Facebook pages • Patients, boss, future employer, in-laws, will read everything you write • Be nice—avoid negative comments about your hospital, colleagues, and patients! • Don’t be anonymous—take responsibility for your words

39. Just Like a Tattoo… Available at: http://www.tattoo-designs-free.com/heart.html.

40. It Seemed Like a Good Idea at the Time… • Everything you write on the internet is “engraved in stone” in the internet “cloud” • Don’t say anything you wouldn’t want to read in the newspaper • Self-censorship is a good thing… • Take a “time out” before you hit “SHARE” or “SEND”! (Pause before you post)

41. Educate patients Educate yourself Promote awareness (advertise) Build relationships Be polite Do NOT practice medicine Do NOT socialize with patients—respect boundaries! Never discuss patients by name—HIPAA1 Don’t say anything online you might regret later Do’s and Don’ts of Social Media 1. Health Insurance Portability and Accountability Act, 1996. Available at: http://www.cms.gov/HIPAAGenInfo/02_TheHIPAALawandRelated%20Information.asp#TopOfPage.

42. Answers to the 4 Questions: • Are You “LinkedIn?”—business • Did you “Friend” anyone today?— Facebook • Have you posted questions for your fellow “Sermoans”?—clinicians • Did you “tweet” this week?—Twitter

43. Learn More About Social Media • Social Networking 101 for Physicians—Massachusetts Medical Society CME Program1 • Guidelines for Physician-Patient Electronic Communications—AMA2 1. Massachusetts Medical Society CME Program. Available at: http://www.massmed.org/AM/Template.cfm?section=Communication4&Template=/CM/HTMLDisplay.cfm&ContentID=32899.2. American Medical Association. Available at: http://www.ama-assn.org/ama/pub/about-ama/our-people/member-groups-sections/young-physicians-section/advocacy-resources/guidelines-physician-patient-electronic-communications.shtml.

44. Thanks for Listening! The End

45. Using Current Treatments to Optimize Patient Outcomes Jack N. Ratchford, MD Assistant Professor of Neurology Johns Hopkins University School of Medicine Baltimore, Maryland

46. Current disease-modifying treatment options Head-to-head clinical trials High-risk clinically isolated syndrome treatment trials Managing breakthrough disease Individualizing MS care Technology for MS patients and clinicians Topics

47. FDA-approved Disease-Modifying MS Treatments Abbreviations: IFN, interferon; IM, intramuscular; IV, intravenous; PO, by mouth; SC, subcutaneous. *Bayer Healthcare Pharmaceuticals Inc., Montville, NJ; †Novartis Pharmaceuticals Corporation, East Hanover, NJ; ‡Biogen Idec Inc., Cambridge, MA; §EMD Serono, Inc., Rockland, MA; ¶TEVA Neuroscience, Inc, Kansas City, MO. Drugs@FDA. Available at: http://www.accessdata.fda.gov/Scripts/cder/DrugsatFDA/. Graphic courtesy of Dr. Jack Ratchford.

48. REGARD1 BEYOND2 BECOME3 TRANSFORMS4 Recent Head-to-head Trials Abbreviations: BECOME, Betaferon vs Copaxone in MS with Triple-Dose Gadolinium and 3-Tesla MRI Endpoints; BEYOND, Betaferon/Betaseron Efficacy Yielding Outcomes of a New Dose; REGARD, Rebif vs Glatiramer Acetate in Relapsing MS Disease; TRANSFORMS, TRial Assessing injectable InterferoN vS FTY720 Oral in RrMS. 1. Mikol DD, et al. Lancet Neurol. 2008;7:903-914. 2. O'Connor P, et al. Lancet Neurol. 2009;8:889-897. 3. Cadavid D, et al. Neurology. 2009;72:1976-1983. 4. Cohen JA, et al. N Engl J Med. 2010;362:402-415.

49. Patients: relapsing-remitting MS; IFNβ and glatiramer acetate treatment naive • Design: 96-week, randomized, open-label, SC IFN β-1a vs glatiramer acetate • Outcome: time to 1st relapse, MRI • Results • No significant difference in time to 1st relapse • No difference in number or change in volume for T2 lesions • Fewer gadolinium-enhancing lesions in the SC IFN β-1a group • Comments: similar efficacy; less activity than expected in the study population REGARD Mikol DD, et al. Lancet Neurol. 2008;7:903-914.

50. Patients: early, treatment-naive relapsing-remitting MS Design: randomized to SC IFN β-1b 500 mcg (higher dose), 250 mcg (standard dose), or glatiramer acetate Outcome: relapse rate, disability progression Results: no differences Comments: same efficacy for glatiramer acetate, SC IFN β-1b, and double-dose SC IFN β-1b; implies a ceiling effect with IFN β BEYOND O'Connor P, et al. Lancet Neurol. 2009;8:889-897.