Danish Ministerial Conference
Horizon 20/20
Societal Challenges
1 February 2012
Dr Mary Baker MBE
President, European Brain Council
Patron, European Parkinson’s Disease Association
Costs of disorders of the brain
In Europe 2010:
• €798 billion across 30 countries
and 19 groups of disorders
• Has increased from €386 billion
in 2004
European Neuropsychopharmacology (2011) 21, 718-779
Distribution of costs:
Total disorders of the brain
European Neuropsychopharmacology (2011) 21, 718-779
Distribution of Costs:
Neurological & Mental disorders
Neurological disorders
Mental disorders
European Neuropsychopharmacology (2011) 21, 718-779
The world is living longer
A baby girl born in Japan has a
50/50 chance of living 100 years
Global ageing in the 21st century
‘The world
stands on the threshold of a social
transformation - even a revolution - with few parallels in
humanity's past.... perhaps two-thirds of all people who
have ever reached the age of 65 are alive today.’
Peter G. Peterson
The changing role of women
In the 1920’s, a couple in their 80’s
had 44 female relatives 14 of these did not work outside
the home environment
In the year 2000, a couple in their
mid 70’s had 13 female relatives 3 of these did not work outside
the home environment
What is the situation in 2012?
Provision of culturally relevant care
The challenge of migration
Time with the doctor
.....12 minutes
Access to medication
A very uneven playing field
Counterfeit Medicines
Counterfeit medicines
2008 ‘Project Medifake’ European Customs initiative
3 million packs captured over two months
4 MHRA batch recalls in 2007
EAASM found 62% of medicines bought from internet to
be fake or substandard (Counterfeit Superhighway - 2008)
EU Legislation anticipated - this will tighten supply chain
Way forward
A quick fix
Safety versus innovation
Education of benefit/risk
Quote from cancer patient:
‘I am already in an unsafe
world, a little more
unsafeness doesn’t worry me’
Dr Albert Jovell, Barcelona
HMA/EMA Guidance Document
on the identification of commercially
confidential information and protection of
personal data within the structure of the
marketing authorisation (MA) dossier –
release of information after granting of a
marketing authorisation
The challenge ...
effective communication
New approach to clinical trials
Patient reported outcomes
Develop a measurement for
central nervous diseases in
partnership with:
• academia
• clinicians
• patients and their families
The Regulator and the Payer
Professor Guido Rasi
Sir Michael Rawlings
Chief Executive Officer
European Medicines Agency (EMA)
National Institute of Health
& Clinical Excellence (NICE)
Engagement with the Payers
60% of NHS budget is spent on lifestyle issues:
• Ageing
• Drug Addiction
• Infertility
• Alcohol
• Sexual health
• Obesity
• Smoking
Distress is not enough
Patient advocacy groups
need to:
Establish credibility
Collect evidence
Contribute to discussions
Understand health
technology assessments
HTA Summer School for patient groups
Collaboration between EFNA and
London School of Economics:
September 2009
May 2010
June 2010
September 2010
June 2011
September 2011
Working for people living with brain disorders
The Patient’s journey
Information is needed from:
• Clinician – about the disease
• Industry – about the
• Patient NGOs – about the
fellow travellers
A major challenge – societal
• How do we involve
patients/carers in
• An informed
patient is a cost
effective patient
Working together
Join the team
Patients have a voice
and need:
• to be heard
• to be listened to
• to be inclusive
The future of medicine
Today we diagnose and
treat based on symptoms
and a subjective
interpretation of
In the future we
diagnose and treat based
on biology and select
medication based on an
objective evaluation of the
benefit/risk for the
individual patient
• The pharmaceutical industry
• The clinicians
• Patient organisations
Science should be shared
From the bench to the bedside
New drug application &
~ 2 years
Preclinical & clinical development
~ 8 years
HTA review ~
2 years
Management of long term chronic
• The ability to adapt
and self manage
• To be able to
participate in social
activity despite all
The Patient Academy
Partnership with
London School of Economics
• Patient-centered research
• Patient-centered training
 understanding benefit/risk
 patient reported outcomes
 improving health literacy
• The grand challenge of society
requires co-operation and
partnership from a range of
• Creating high performing
networks is essential
• European Brain Council and the
Year of the Brain are examples of
this in practice
What matters most ...
‘It is not the strongest of
the species that survives
nor the most intelligent
that survives. It is the one
that is most adaptable to
Charles Darwin
1809 - 1882

Mary Baker - eu2012.dk