Social Media and Medicine: Relevance to Cancer Care

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Social media are pervasive, powerful communications tools. What are the risks and benefits of using them in cancer care? I discuss it in this talk at Yale April 10, 2014.

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Social Media and Medicine: Relevance to Cancer Care

  1. 1. SOCIAL MEDIA AND MEDICINE Relevance to Cancer Care
  2. 2. Conflict of Interest  External advisor, Mayo Clinic Center for Social Media  Previous consulting for Augmenix, Inc (2012- May 2013)  No financial links, leadership position with any social media company
  3. 3. Overview  Social Media  Definition  Types  Role in Medicine  Risks and Opportunities  Clinical  Research  Why it matters in cancer care  Ethical  Practical  Summary http://www.slideshare.net/subatomicdoc
  4. 4. Definition “Social media are web-based tools for interaction that, in addition to conversation, allow users to share content such as photos, videos, and links to resources” -- Meredith Gould, The Social Media Gospel
  5. 5. Brave New World  Geography doesn’t matter as much as internet access  Communities are defined by interest, not location  New dynamics for previously isolated people
  6. 6. Social Networking Sites Nov 2013 data Source: Business Insider http://read.bi/1irEope
  7. 7. Rapid Adoption in U.S. In the US: 35% have searched for a medical condition online for diagnosis 80% start with a search engine N=3,014, Sept. 2012 Source: Pew Internet Source: Pew Internet http://bit.ly/1moDRZ4 http://bit.ly/1gXxHv7 N = 1,445, Sept. 2013 42% of adults are using social networks
  8. 8. Patient Oriented Sites
  9. 9. http://on.fb.me/1jiIiUW
  10. 10. Institute of Medicine report Grajales et al, IOM/PLM 2014 http://bit.ly/1deNg2g CR [1058] PLM [2125] Age 60+ 30% 23% Fair/poor health 15% 54% Specialist is main provider 3% 17% Feel medical care isn’t coordinated 30% 37% Want more health information sharing 95% 98% CR = Consumer Reports survey PLM = Patientslikeme
  11. 11. Data Sharing: PatientsLikeMe  Willing to share de-identified data with:  MDs  94%  Researchers  92%  Drug companies  84%  Public Health officials  77%  Perception of how likely PHI might be used  76% without my knowledge  72% to deny health benefits  66% to limit job opportunities  61% stolen by individuals or companies Grajales et al, IOM/PLM 2014 http://bit.ly/1deNg2g
  12. 12. Track and Interact Activity No Conditions 1 Condition 2+ Conditions Self-track health metrics 61% 70% 80% Trackers share notes w/others 30% 39%  Trackers with chronic conditions  41% use pencil/paper  4% mobile phone app  1% use a website Source: Pew Internet http://bit.ly/1gXxHv7
  13. 13. For Professionals
  14. 14. http://bit.ly/1dDJtq3
  15. 15. http://bit.ly/1fRMP8Q
  16. 16. Rapid growth of professionals on Twitter • Data analytics firms track us, including NPI numbers Creation Pinpoint, http://bit.ly/1hU6Kqd
  17. 17. Cancer on Twitter Organization Twitter Handle Followers World Health Organization @WHO 1.2 M Mayo Clinic @MayoClinic 754 K American Cancer Society @AmericanCancer 457 K Health Human Services @HHSGov 369 K Science Magazine @ScienceMagazine 249 K NEJM @NEJM 177 K Lancet @TheLancet 111 K National Cancer Institute @theNCI 51 K Institute of Medicine @theIOM 31 K MD Anderson @MDAndersonNews 26 K ASCO @ASCO 24 K AACR @AACR 18 K RSNA @RSNA 14 K American College of Surgeons @AmCollSurgeons 14 K Twitter data, March 29, 2014
  18. 18. Surgeons on Twitter Person Institution Twitter Handle Followers Sanjay Gupta Emory-CNN @drsanjaygupta 1.8 M Atul Gawande Brigham & Women’s @AtulGawande 85 K Diane Radford @dianeradfordmd 5985 Deanna Attai @DrAttai 5535 Susan Love @DrSusanLove 4480 David Gorski Karmanos/Wayne State @oracknows 4270 Aaron Cohen Gadol Indiana University @AaronCohenGadol 2415 Tom Varghese, Jr. UW/Seattle CCA @TomVargheseJr 2303 Brian Stork @StorkBrian 2249 Niraj Gusani Penn State @NirajGusani 2068 Stacy Loeb NYU @loebstacy 1619 Matthew Cooperberg UCSF @dr_coops 1576 Twitter data, March 29, 2014
  19. 19. Medical Oncology on Twitter Oncologist Institution Twitter Handle Followers Steven Eisenberg @drseisenberg 21.9 K Anas Younes MKSCC @DrAnasYounes 10.1 K Steven Tucker @drsteventucker 8096 Naoto Ueno MDACC @teamoncology 7708 Michael Fisch MDACC @fischmd 7707 Elaine Schattner Columbia @ElaineSchattner 6764 H. Jack West Swedish Hospital @JackWestMD 5689 Robert Miller JHMI @rsm2800 5483 Mike Thompson Aurora Health @mtmdphd 4849 Robert Orlowski MDACC @Myeloma_Doc 2818 Pervez Dara @JediPD 2351 Wafik El-Deiry Penn State @weldeiry 2178 Don Dizon MGH @drdonsdizon 2232 Julie Gralow U Wash/Seattle CCA @jrgralow 1818 Source: Twitter, 3/29/2014
  20. 20. Radiation Oncology on Twitter Radiation Oncologist Institution Twitter Handle Followers Shalin Shah MDACC Sugarland @ShalinJShahMD 8416 Matthew Katz @subatomicdoc 7218 Krupali Tejura @krupali 4872 Colin Champ UPMC @CavemanDoctor 2859 Ian Pereira* Kingston (Canada) @IanJohnPereira 1273 Mary Gospodarowicz PMH @marykge 691 Jonathan Livergant* U Toronto @jpil 680 Cary Gross Yale @cpgYALE 580 Leah Minnie Katz NYU @leah_minnie 516 C. Dave Fuller MDACC @cd_fuller 383 Miriam Knoll* Mount Sinai @Mknoll_MD 250 Wally Curran Emory @wallyjc 244 Brandon Mancini* Yale @brandonmancini 200 Source: Twitter, 3/30/2014* Resident
  21. 21. Cancer Hashtags on Twitter Hashtag Tweets 2013 Impressions 2013 #oncology 36821 108162977 #breastcancer 374176 1482780746 #bcsm 49077 359715942 #lungcancer 53609 173792419 #lcsm 32339 59175200 #coloncancer 23520 109520148 #crcsm 1278 3829527 #prostatecancer 33182 133968946 #pcsm 2333 6671329 #gyncsm 4374 4185558 Source: Symplur.com
  22. 22. What is Stopping Us? QuantiaMD.com, 2011 http://bit.ly/OKR00w
  23. 23. Risks of Social Media  Patients/Caregivers  Misinformation  Information bias  Omission  Loss of privacy  Job/insurance discrimination  Marketing manipulation  Psychologic amplification  Professionals  Professional harm  Reputation  Malpractice  Patient harm  Loss of boundaries  Misinterpreted/bad communication  Psychological harm  Split personality  Burnout
  24. 24. Benefits of Social Media  Patients/Caregivers  Support  Education  Collaboration  Advocacy  Professionals  Coordinate Care  Collaboration  Networking  Education  Career Opportunity  Reputation Management
  25. 25. Learning From Patients http://bit.ly/1jiR1Gs
  26. 26. Learning – Patient Education http://bit.ly/1bYlAdQ
  27. 27. Medical Education http://bit.ly/1dILSVS
  28. 28. Share Your Expertise http://slidesha.re/1hTBgk7
  29. 29. Advocacy  On Facebook, Twitter  Assists with building radiation facilities and raising cancer funding globally www.radiatinghope.org
  30. 30. Tumblr, http://bit.ly/1ivKPaA
  31. 31. Online Search = Privacy Risk  Web surfing may give your search information  65% of sites have at least 1 tracker  35% leaked information to 3rd parties Martin Huesch, JAMA Int Med 2013
  32. 32. Google Glass Katz M, KevinMD.com, http://bit.ly/OPUY7M
  33. 33. Who represents doctors? Silent since 10/2013
  34. 34. Date of download: 2/9/2014 Copyright © 2014 American Medical Association. All rights reserved. From: Physician Violations of Online Professionalism and Disciplinary Actions: A National Survey of State Medical Boards JAMA. 2012;307(11):1141-1142. doi:10.1001/jama.2012.330 Bar length indicates total frequency for each violation type. Figure Legend:
  35. 35. Doctors are public figures  UK survey of 953 respondents in general public  Professionalism based upon  clinician  workmanship  citizenship  Respondents expect doctors to be:  confident  reliable  composed  accountable  dedicated Chandratilake et al, Clin Med 2010
  36. 36. @Doctor_V @Berci @SeattleMamaDoc @DrJenGunter @KevinMD @hjluks @doctorwes @oracknows @KentBottles @amcunningham @RyanMadanickMD @drmikesevilla
  37. 37. What About Research? http://bit.ly/OPVFxV
  38. 38. Funding Research Accessed 3/15/14 http://bit.ly/OPVUsB
  39. 39. Harnessing Amateurs ScienceDaily.com, http://bit.ly/1jz55HJ
  40. 40. Gamification of Science  Playstation3  >130,000 players Geek.com, http://bit.ly/1gZNOs3
  41. 41. DNA Analysis by Smartphone  1.5 M chromosomes analyzed in 1 month  Available for iOS, Android Cancer Research UK, http://bit.ly/1hduzYD
  42. 42. Parkinson’s on PatientsLikeMe Accessed 4/6/2014, http://bit.ly/1lJ2cbX
  43. 43. Community or research cohort?  PLM has two peer-reviewed publications on Parkinsons  Up to 50% of patients develop psychosis  Large cohort had 28% incidence of dementia by DSM-IV criteria  Does terms of service count as consent? Fenelon and Alves, J Neurol Sci 2010 http://1.usa.gov/1hiYXG9 Riedel et al, J Neurol 2008 http://1.usa.gov/1jROYqR
  44. 44. Wall Street Journal Published 10/12/2011 http://on.wsj.com/1hU8zDA • AC Nielsen removes data from website directly • “I felt totally violated” •"We're a business, and the reality is that someone came in and stole from us," says PatientsLikeMe's chairman, Jamie Heywood.
  45. 45.  Personal genomics services  Saliva  SNPs for detecting risk of disease  Test for $99  Direct to consumer, no genetic counseling  Shut down by FDA 11/2013 for not complying with required testing  Interference with empowered patient/consumer rights Direct to Consumer Research Source: FDA, http://1.usa.gov/1nVOyUt
  46. 46. DTC Personal Genomics  No corporate transparency  No evidence test works  Privacy risks  Vague whether genome used for research  Allows children/vulnerable populations to be tested  No discussion or review with a genetic counselor http://bit.ly/18jOCku
  47. 47. http://nyti.ms/1m1AlR9
  48. 48. What about academic medicine?
  49. 49. Ethics in Flux  Newer research models conflict directly with more traditional interpretation of Belmont Report, bioethics  HIPAA an issue as well  Do we need to adapt current ethical frameworks, or how these technologies are used?
  50. 50. Research in an Apomediated World  Subjects can play a more active role in research  How do you regulate “when it is not clear who the researcher is and who the subject is”  What role for IRBs if done online only?  How can you separate trial recruitment from solicitation? Dan O’Connor, J Law Med Ethics 2013
  51. 51. Does Autonomy Trump All?  Autonomy favors empowered patient/consumer rights  Survey of 51, 946 show that patients with highest satisfaction scores had worse outcomes than least satisfied  Inpatient hospitalization OR 1.12  Total health expenditures 8.8% higher  All-cause mortality OR 1.26 Fenton et al, Arch Int Med 2012
  52. 52. WHO Definition of Health
  53. 53. Oath of Maimonides “Grant me the strength, time and opportunity always to correct what I have acquired, always to extend its domain; for knowledge is immense and the spirit of man can extend indefinitely to enrich itself daily with new requirements.”
  54. 54. Extend Your Domain Online Bik & Goldstein, PLOS One 2013
  55. 55. Relevance to Research  Only 0.04% of published medical research gets mainstream attention  Social media provides a way to share your research with patients, caregivers who may directly benefit
  56. 56. Twitter and Academic Citations Eysenbach, JMIR 2011
  57. 57. Altmetrics correlates with impact factor  11 Components:  Tweets  Facebook posts  Blog posts  Google+  Nature Publishing Group highlights  Reddit  Forum threads  Q&A  Pinterest  LinkedIn Thelwall et al, PLOS ONE 2013
  58. 58. Annual Meeting Twitter Activity Katz M, ASCO Connection 2013 http://bit.ly/Q9LfdJ
  59. 59. Followers Magnify the Message Katz M, ASCO Connection 2013 http://bit.ly/Q9LfdJ
  60. 60. Practical  Cancer patients and caregivers are increasingly online, seeking help and support  If clinicians and researchers don’t engage, expect more influence on health decisions by  Peers and family  Fearmongerers, opportunists  Industry
  61. 61. Participation is not optional
  62. 62. Summary  Social media are pervasive, powerful communications tools  Rapid adoption in healthcare despite poorly defined risks and benefits  More connected = more reward and risk  Research is critical to develop safe effective use in cancer care
  63. 63. Thank you

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