Using social-media to manage and research MS › › resource › ...Using social-media to manage...
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6/26/2015 1 Using social-media to manage and research MS *social-media = social networking sites; for example Twitter, Facebook, Blogs, Wikipedia, Wikis, Pinterest, SnapChat, Google Plus, LinkedIn, SlideShare, etc. Gavin Giovannoni Disclosures Professor Giovannoni has received personal compensation for participating on Advisory Boards in relation to clinical trial design, trial steering committees and data and safety monitoring committees from: Abbvie, Bayer- Schering Healthcare, Biogen-Idec, Canbex, Eisai, Elan, Fiveprime, Genzyme, Genentech, GSK, GW Pharma, Ironwood, Merck-Serono, Novartis, Pfizer, Roche, Sanofi-Aventis, Synthon BV, Teva, UCB Pharma and Vertex Pharmaceuticals. Regarding www.ms-res.org survey results in this presentation: please note that no personal identifiers were collected as part of these surveys and that by completing the surveys participants consented for their anonymous data to be analysed and presented by Professor Giovannoni.
Transcript of Using social-media to manage and research MS › › resource › ...Using social-media to manage...
6/26/2015
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Using social-media to manage and research MS
*social-media = social networking sites; for example Twitter, Facebook, Blogs, Wikipedia, Wikis, Pinterest, SnapChat, Google Plus, LinkedIn, SlideShare, etc.
Gavin Giovannoni
Disclosures
Professor Giovannoni has received personal compensation for participatingon Advisory Boards in relation to clinical trial design, trial steeringcommittees and data and safety monitoring committees from: Abbvie, Bayer-Schering Healthcare, Biogen-Idec, Canbex, Eisai, Elan, Fiveprime, Genzyme,Genentech, GSK, GW Pharma, Ironwood, Merck-Serono, Novartis, Pfizer,Roche, Sanofi-Aventis, Synthon BV, Teva, UCB Pharma and VertexPharmaceuticals.
Regarding www.ms-res.org survey results in this presentation: please notethat no personal identifiers were collected as part of these surveys and thatby completing the surveys participants consented for their anonymous datato be analysed and presented by Professor Giovannoni.
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Why did I get involved in social media?
Prof Giovannoni is working hard for you!
Overbooked, harassed8 new & 20 follow-up slots per clinicDouble-bookingsRunning between consulting rooms A & BThe 5-min history & 5-min neurological examination
The NHS is working hard for you!
Time is my most precious resource?
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Time Repetition
Why speak to the individual when you can have a dialogue with several Msers* at once?
Why repeat yourself?
*MSer = a neutral descriptor for someone with MS
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A BLOG FOR PEOPLE WITH MS AND THEIR FAMILIES“Interpreting the Good, Bad and other Research News”
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Vanity
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Reasoning by analogy
"There is a lovely road that runs from Ixopo into the hills..."Alan Paton, Cry, The Beloved Country, Ch. 1
My beloved country
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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
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“In a world in which anti-scienceappears to be on the increase, itis imperative that scientistsimprove how they engage with thegeneral public about research…..”
Do you want to have regrets?
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Powerful Research Tool
Gafson & Giovannoni. CCSVI-A. A call to clinicans andscientists to vocalise in an Internet age.Mult Scler Relat Disord 2014 Mar;3(2):143-6.
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Social networks are the key to the world
www.multiple-sclerosis-research.org / www.ms-res.org
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Clinical practice?
>1.5 million SlideShare views
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Clin
icSp
eak
www.clinicspeak.com
Clin
icSp
eak
www.clinicspeak.com
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Clin
icSp
eak
www.clinicspeak.com
ClinicSpeak
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ClinicSpeak
Epstein Bar Virus
Genetics
Vitamin D
Smoking
Risks
Adverse events
DifferentialDiagnosis
MRI
EvokedPotentials
Lumbar puncture
BloodTests
DiagnosticCriteria
Cognition
Depression
Fatigue
Bladder
Bowel
Sexual dysfunction Tremor
PainSwallowing
SpasticityFalls
Balance problems Insomnia
Restless legsFertility
Clinical trials
Gait
Pressuresores
Oscillopsia
Emotionallability
Seizures
Gastrostomy
Rehab
Suprapubiccatheter Intrathecal
baclofen
Physio-therapy
Speech therapy
OccupationalTherapy
Functional neurosurgery
Colostomy
Tendonotomy
Studying
EmploymentRelationships
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
AlternativeMedicine
PregnancyBreastFeeding
Research
Insurance
Visual loss
PalliativeCare
Assistedsuicide
Socialservices
Legalaid
Genetic counselling
PreventionDiagnosis
DMTSymptomatic
Therapist
Terminal
CounsellingAn holistic approach to MSAn holistic approach to MS
Intrathecalphenol
Fractures
Movement disorders
Osteopaenia
Brain atrophy
Hearing loss
Tinnitus
Photophobia
Hiccoughs
DVLA
Neuroprotection
Psychosis
Depersonaliation
BrainHealth
CognitiveReserve
Sudden death
SuicideOCD
Narcolepsy
ApnoeaCarers
Respite
Hospice
Respite
Dignitas
Advanced Directive
Rhiztomy
Rhiztomy
Wheelchair
Walking aids
Blood/Organdonation
Brain donation
Exercise therapy
NABs
Autoimmunity
Infections
Outcome measures
WebResources
Pathogenesis
Doublevision
What isMS?
NEDA
T2TOCT
Neurofilaments
JCV statusPharma
Anaesthesia
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Big issues
Control Multiple sclerosis
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www.ms‐res.org
www.ms‐res.org
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Adoption
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Education
Key milestones in the development of Fingolimod
1992: Fingolimod (FTY720) first synthesized by Japanese scientists
1997: Fingolimod in-licensed by Novartis for clinical development
1998: First studies in man (Phase 1 trials) and subsequent start of transplantation trials
2003: Start of MS Phase II trial
June 2005: Presentation of Phase II study results followed by publication in NEJM 2006
Jan 2006: Start of Phase III FREEDOMS study in RRMS
May 2006: Start of Phase III TRANSFORMS study in RRMS
June 2006: Start of Phase III FREEDOMS II study in RRMS
July 2008: Start of Phase III INFORMS trial to assess suitability for treatment of PPMS
Dec 2008: Release of TRANSFORMS study results and presentation at AAN April 2009
Sep 2009: Release of FREEDOMS study results and presentation at AAN April 2010
Dec 2009: Regulatory submission to FDA and EMA (ROW submissions in Q1 2010)
Feb 2010: Results of Phase III TRANSFORMS & FREEDOMS studies published in NEJM
Sep 2010: Approval by Russian Health Authority
Sep 2010: Approval by the US FDA for relapsing MS
April 2015: Negative PPMS (TRANSFORMS) Study
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RESEARCH BLOG www.ms-res.org
“Drug-The Game”
Development Process-Why is it Slow
Publications
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Start of Progression
What do you call someone who has MS?
Term MS Blog MS Society Science
Patient 8% 8% 98%PwMS 38% 68% 24%MSer 52% 12% 0%
Research
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Active tablet
Placebo tablet
Year 1 Year 2 Year 3
600 MSers
300 MSers
300 MSers
Recruitment Trial Data analysis
6 months
6 months 60 MSers
6 months
LP1 LP2 LP3
30 MSers active tablet
30 MSers placebo tablet
2 years
6 months
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13%
66%
21%
n = 127
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Political Agenda
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Self-management & Monitoring
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Monitoring your own disease
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Adapt or die?
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Analogue or digital?
Dinosaur or wired?
Benefits & Consequences
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Conclusions• Social Media / eHealth / eMonitoring are here to stay• Adoption is occurring very rapidly• Advantages are obvious
• Improved efficiency (cost and time effective)• Better outcomes• Higher satisfaction
• Hurdles to adoption are not insurmountable• Privacy and data protection• Medico-legal issues
• It is hard to ignore the positives; ask your patients?• Change agent
