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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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