Social Media and Multiple Sclerosis


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Social Media and Multiple Sclerosis

  1. 1. BARTS-MS The role of social media in communicating and raising patient expectations Gavin Giovannoni Barts and The London
  2. 2. BARTS-MS Topics to be covered 1. What is social media? 2. Why is it important for clinicians? a. Two-way communication b. Saving time c. Moral responsibility d. Clinical practice 3. Why is important for patients? a. Raising patient expectations b. Patient engagement c. Empowerment d. Self-management 4. Future trends
  3. 3. BARTS-MS What is social media?
  4. 4. BARTS-MS Social Media “websites and applications that enable users to create and share content or to participate in social networking.” Source: Google Dictionary
  5. 5. BARTS-MS social media = connected world = small world
  6. 6. BARTS-MS social media is a two-way process
  7. 7. BARTS-MS Source:
  8. 8. BARTS-MS Why is it important for clinicians to engage with social media?
  9. 9. BARTS-MS Prof Giovannoni is working hard for you! Overbooked, harassed 8 new & 20 follow-up slots per clinic Double-bookings Running between consulting rooms A & B The 5-min history & 5-min neurological examination The NHS is working hard for you! Time is your most precious resource?
  10. 10. BARTS-MS
  11. 11. BARTS-MS Case study 1, 2, 3, 4, ……… n 42 year old male diagnosed with RRMS aged 32 • Interferon-beta for 8 years • Relapse free for the last 4 years • Last 2-years noticed increasing difficulty walking; now using a walking stick Question: “Prof G, have you heard about liberation therapy? Would you recommend I have venoplasty?”
  12. 12. BARTS-MS social media phenomena
  13. 13. BARTS-MS A BLOG FOR PEOPLE WITH MS AND THEIR FAMILIES “Interpreting the Good, Bad and other Research News”
  14. 14. BARTS-MS Why have a conversation with an individual patient when you can have a dialogue with several patients at once? Why repeat yourself?
  15. 15. BARTS-MS Moral responsibility Are there consequences for not engaging on social networks?
  16. 16. BARTS-MS "There is a lovely road that runs from Ixopo into the hills..." Alan Paton, Cry, The Beloved Country, Ch. 1 My beloved country
  17. 17. BARTS-MS >330,000 lives lost
  18. 18. BARTS-MS HIV/AIDS Analogy Four types of AIDS denialist: 1. The ‘dissident scientist’ who lends credibility 2. The ‘cultropreneur’ who peddles quack therapies 3. The ‘living icon’ or ‘long-term survivor’ 4. The ‘praise-singer’ or ‘journalist’ or ‘politician’ who sows doubt about HIV causing AIDS The HIV/AIDS community 1. Patient activists / organisers 2. Access to media 3. Conspiracy theories
  19. 19. BARTS-MS Multiple Sclerosis and Related Disorders 2014;3(2):143–146.
  20. 20. BARTS-MS CCSVI
  21. 21. BARTS-MS “An obligation arising out of considerations of right and wrong.” Moral Obligation Source: Google Dictionary
  22. 22. BARTS-MS Clinical practice
  23. 23. BARTS-MS Case study Question: “Prof G, I have had RRMS for 7 years; 4.5 years on interferon-beta until pregnancy, no medication for 2.5 years, mild symptoms once a year. I have been offered GA by my consultant. Should I start GA?”
  24. 24. BARTS-MS Clinic Speak
  25. 25. BARTS-MS Case study Question: “Prof G I have had 33 natalizumab infusions and I have just found out that I am JCV seropositive with an antibody index of 3.2. What should I do?”
  26. 26. BARTS-MS PML
  27. 27. BARTS-MS
  28. 28. BARTS-MS 17%
  29. 29. BARTS-MS
  30. 30. BARTS-MS
  31. 31. BARTS-MS
  32. 32. BARTS-MS
  33. 33. BARTS-MS
  34. 34. BARTS-MS
  35. 35. BARTS-MS
  36. 36. BARTS-MS
  37. 37. BARTS-MS 17% 85% “The power of an infographic……less is more.”
  38. 38. BARTS-MS >850,000 SlideShare views
  39. 39. BARTS-MS
  40. 40. BARTS-MS
  41. 41. BARTS-MS
  42. 42. BARTS-MS Epstein Bar Virus Genetics Vitamin D Smoking Risks Adverse events Differential Diagnosis MRI Evoked Potentials Lumbar puncture Blood Tests Diagnostic Criteria Cognition Depression Fatigue Bladder Bowel Sexual dysfunction Tremor Pain Swallowing SpasticityFalls Balance problems Insomnia Restless legsFertility Clinical trials Gait Pressure sores Oscillopsia Emotional lability Seizures Gastrostomy Rehab Suprapubic catheter Intrathecal baclofen Physio- therapy Speech therapy Occupational Therapy Functional neurosurgery Colostomy Tendonotomy Studying Employment Relationships Travel Vaccination Anxiety Driving Nurse specialists Family counselling Relapses 1st line 2nd line Maintenance Escalation Induction Monitoring Disease-free Disease progression DMTs Side Effects Advanced Directive Exercise Diet Alternative Medicine Pregnancy Breast Feeding Research Insurance Visual loss Palliative Care Assisted suicide Social services Legal aid Genetic counselling Prevention Diagnosis DMT Symptomatic Therapist Terminal CounsellingAn holistic approach to MS Intrathecal phenol Fractures Movement disorders Osteopaenia Brain atrophy Hearing loss Tinnitus Photophobia Hiccoughs DVLA Neuroprotection Psychosis Depersonaliation Brain Health Cognitive Reserve Sudden death Suicide OCD Narcolepsy Apnoea Carers Respite Hospice Respite Dignitas Advanced Directive Rhiztomy Rhiztomy Wheelchair Walking aids Blood/Organ donation Brain donation Exercise therapy NABs Autoimmunity Infections Outcome measures Web Resources Pathogenesis Double vision What is MS? NEDA T2T OCT Neurofilaments JCV status Pharma Anaesthesia
  43. 43. BARTS-MS Why is important for patients to engage with social media?
  44. 44. BARTS-MS Keeping Up-to-date Access to Experts
  45. 45. BARTS-MS Raising expectations
  46. 46. BARTS-MS Social Capital
  47. 47. BARTS-MS Self-monitoring
  48. 48. BARTS-MS Finding, accessing and rating your MS service
  49. 49. BARTS-MS
  50. 50. BARTS-MS Patient empowerment
  51. 51. BARTS-MS
  52. 52. BARTS-MS
  53. 53. BARTS-MS Mser-led Clinical Trials
  54. 54. BARTS-MS Guidelines
  55. 55. BARTS-MS What are the negatives?
  56. 56. BARTS-MS Be prepared for criticism
  57. 57. BARTS-MS
  58. 58. BARTS-MS Analogue or digital? Dinosaur or wired?
  59. 59. BARTS-MS
  60. 60. BARTS-MS Conclusions • Social media and eHealth are here to stay – It is your choice; you can either join the movement and benefit from the technology or remain a spectator • Adoption is occurring very rapidly in some sectors • Advantages are obvious – Improved efficiency (cost and time-effective) – Better outcomes (adherence, social capital, self-management) – Higher satisfaction – Innovation in multiple areas (asynchronous, new trial designs, automation, etc.) • Disadvantages are not so obvious – Time-consuming; need to be up-to-date and change posts regularly – Need to be disciplined – Use to make sure you work within your national guidelines • Hurdles to adoption of eHealth are not insurmountable – Privacy, data protection and medico-legal issues are being resolved – Numerous guidelines are helping adoption