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The role of social media in communicating and raising patient expectations

Gavin Giovannoni

Barts and The London

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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

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What is social media?

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Social Media

“websites and applications that enable users to create and share content or to participate in social networking.”

Source: Google Dictionary

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social media = connected world = small world

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social media is a two-way process

BARTS-MS Source: www.conversationprism.com

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Why is it important for clinicians to engage with social media?

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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?

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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?”

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social media phenomena

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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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Why have a conversation with an individual patient when you can have a dialogue with several patients at once?

Why repeat yourself?

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Moral responsibility

Are there consequences for not engaging on social networks?

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"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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>330,000 lives lost

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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

BARTS-MS Multiple Sclerosis and Related Disorders 2014;3(2):143–146.

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CCSVI

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“An obligation arising out of considerations of right and wrong.”

Moral Obligation

Source: Google Dictionary

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Clinical practice

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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?”

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Clinic Speak

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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?”

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PML

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17% 85%

“The power of an infographic……less is more.”

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>850,000 SlideShare views

BARTS-MS www.agencyofdesign.co.uk

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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

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 An 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

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Why is important for patients to engage with social media?

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Keeping Up-to-date

Access to Experts

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Raising expectations

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Social Capital

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Self-monitoring

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Finding, accessing and rating your MS service

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Patient empowerment

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Mser-led Clinical Trials

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Guidelines

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What are the negatives?

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Be prepared for criticism

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Analogue or digital?

Dinosaur or wired?

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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