Download - eHealth presentation at ENS-EFN Istanbul
eHealth: Improving patient engagement Gavin Giovannoni
• Serves on scientific advisory boards for Merck Serono, Biogen Idec and Vertex Pharmaceuticals; and on the speakers bureau for Merck Serono
• Has received speaker honoraria from Bayer Schering Pharma, Merck Serono, Biogen Idec, Pfizer Inc, Teva Pharmaceutical Industries Ltd, Sanofi-Aventis, Vertex Pharmaceuticals, Genzyme Corporation, Ironwood and Novartis
• Has served as a consultant for Bayer Schering Pharma, Biogen Idec, GlaxoSmithKline, Merck Serono, Protein Discovery Laboratories, Teva Pharmaceutical Industries Ltd, Sanofi-Aventis, UCB, Vertex Pharmaceuticals, GW Pharma, Novartis and FivePrime
• Has received research support unrelated to this study from Biogen Idec, Merck Serono, Novartis and Ironwood
Disclosures
Topics to be covered
1. What is eHealth?
2. Patient education
3. Communication
4. Data exchange
5. Patient engagement
6. Trends in eHealth
“eHealth is a form of healthcare practice supported by electronic processes and communication”
The broad definition includes health informatics and a more restricted or narrow definition refers to healthcare practice using the internet and health applications, and links on mobile phones (mHealth)
What is eHealth?
Della Mea V. J Med Internet Res 2001;3:e22
1. Yes
2. No
3. Don’t know
Do you think using eHealth (e.g. internet-linked devices, online tools and information, social media) could increase your patients’ engagement?
Voting pad question
Why am I involved in eHealth?
Time is my most precious resource?
NHS, National Health Service
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 Repetition
Why speak to the individual when you can have a dialogue with several patients at once?
Why repeat yourself?
eHealth is potentially the key to the world
42-year-old male, diagnosed with RRMS aged 32 years
• Interferon-beta for 8 years
• Relapse free for at least 4 years
• Last 2 years, noticed increasing difficulty walking; now using a walking stick
Question: “Professor Giovannoni, have you heard about liberation therapy? Would you recommend venoplasty?”
Case study 1, 2, 3, 4, …n
RRMS, relapsing–remitting MS
CCSVI, chronic cerebrospinal venous insufficiency
A blog for people with MS and their families: “Interpreting the good, bad and other research news”
[Name removed]
My beloved country
"There is a lovely road that runs from Ixopo into the hills..."
Paton A. Cry, the Beloved Country, Chapter 1; Oprah's Book Club Edition. Scribner. 2003 HIV, human immunodeficiency virus
Guardian website. November 2008
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’, ‘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
HIV/AIDS analogy
HIV/AIDS, human immunodeficiency virus/ acquired immunodeficiency syndrome Nattrass N. The AIDS Conspiracy: Science Fights Back. © Columbia University Press. 2012
CCSVI
CCSVI, chronic cerebrospinal venous insufficiency
Gafson AR, Giovannoni G. Mult Scler Relat Disord 2014;3:143-6
Clinical practice?
Question: “Professor Giovannoni, I have had relapsing–remitting MS 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 glatiramer acetate injection by my consultant. Should I start this?”
Case study
Clinic speak
Barts and The London School of Medicine and Dentistry. Multiple Sclerosis Research. July 2013
Question: “Professor Giovannoni, I have had 33 natalizumab infusions and I have just found out that I am JC virus seropositive with an antibody index of 3.2. What should I do?”
Case study
PML
PML, progressive multifocal leukoencephalopathy Barts and The London NHS Trust. Natalizumab Information Sheet. July 2010
Survey: Natalizumab and its complications
From SurveyMonkey™
Barts and The London NHS Trust. Natalizumab Information Sheet. July 2010
Barts and the London School of Medicine and Dentistry. PML Risk Education Guide. 2013
Barts and the London School of Medicine and Dentistry. PML Risk Education Guide. 2013
Barts and the London School of Medicine and Dentistry. PML Risk Education Guide. 2013
Barts and the London School of Medicine and Dentistry. PML Risk Education Guide. 2013
Barts and the London School of Medicine and Dentistry. PML Risk Education Guide. 2013
Barts and the London School of Medicine and Dentistry. PML Risk Education Guide. 2013
Barts and the London School of Medicine and Dentistry. PML Risk Education Guide. 2013
Barts and the London School of Medicine and Dentistry. PML Risk Education Guide. 2013
17% 85%
Barts and the London School of Medicine and Dentistry. PML Risk Education Guide. 2013
Barts and The London School of Medicine and Dentistry. Multiple Sclerosis Research. April 2014
http://www.slideshare.net/gavingiovannoni/barts-the-london-pml-risk-education-guide-june-2013
Question: “Professor Giovannoni, I have had 33 natalizumab infusions and I have just found out that I am JC virus seropositive with an antibody index of 3.2. What should I do?”
Other case studies
Barts and The London School of Medicine and Dentistry. Multiple Sclerosis Research. May 2013
Barts and The London School of Medicine and Dentistry. Multiple Sclerosis Research. August 2013
Epstein–Barr 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
Spasticity Falls
Balance problems Insomnia
Restless legs Fertility
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
Counselling A holistic approach to MS
Intrathecal phenol
Fractures
Movement disorders
Osteopaenia
Brain atrophy
Hearing loss
Tinnitus
Photophobia
Hiccoughs
DVLA
Neuroprotection
Psychosis
Depersonalization
Brain health
Cognitive reserve
Sudden death
Suicide
OCD
Narcolepsy
Apnoea
Carers
Respite
Hospice
Respite
Dignitas
Advanced directive
Rhizotomy
Rhizotomy
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
Monitoring your own disease
Patientslikeme®. April 2014
HealthVault. April 2014
Normal neurological examination
No disability
Minimal disability
Moderate disability
Relatively severe
disability
Disability precludes full daily activities
Assistance required to walk
Restricted to a
wheelchair
Restricted to bed
or chair
Confined to bed
Death
0.0 1.0
2.0 3.0 4.0
5.0 6.0
7.0 8.0
9.0 10.0
Leddy S et al. J Neurol 2013;260:2505-10. Copyright © 2013, Springer-Verlag Berlin Heidelberg
Validating a novel web-based method to capture disease progression outcomes in multiple sclerosis
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4
3
2
0
1
–1
–2
–3
–4
0 1 1.5 2.0 2.5 3.0 3.5 4.0 4.5 5.5 6.0 6.5 7 8
P-EDSS
Web
- ED
SS-
P-E
DSS
* *
EDSS, Expanded Disability Status Scale
• eHealth – currently in the early stages of development
• Government legislation is driving organizations to look to eHealth as a healthcare model
• Organizations believe the greatest benefits of eHealth involve increased efficiency and enhanced ability of healthcare providers to deliver safe and effective care
• Data security is the number one eHealth issue concerning organizations
• Government agencies, health departments and provider organizations are the major solution drivers for eHealth
Trends in eHealth
http://www.wipro.com/Documents/resource-center/library/eHealth.pdf
1. Information resources
2. Risk assessment tools
3. Patient discussion groups, social media, blogs
4. Interactive services to track disease outcomes, quality of life, etc
5. Adherence-logging devices and phone reminder services
What aspects of eHealth do you think could be of most benefit to your patients?
Voting pad question
Adapt or die?
Analogue or digital?
Dinosaur or wired?
Barts and The London School of Medicine and Dentistry. Multiple Sclerosis Research. February 2014
• eHealth is here to stay (you can either adapt or die)
• Adoption is occurring very rapidly in some sectors
• 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
Conclusions
Q&A
Don’t forget to complete your evaluation forms