This document summarizes key points from a presentation on societal and health challenges in Europe given at the 4th International MS Patient Summit in Rome. It discusses the high costs of brain disorders in Europe, which have increased from €386 billion in 2004 to €798 billion in 2010. Indirect costs accounted for 40% of total costs, while direct healthcare costs were 37% and direct non-medical costs were 23%. As life expectancy increases globally, aging populations will present new challenges for healthcare systems. Factors like increased polypharmacy, migration, and access to medications and healthcare were also covered. The presentation argued for partnership, communication, and innovation to help address these issues going forward.

1.
87
4th
Interna*onal
MS
Pa*ent
Summit
‘Societal
and
Health
Challenges
in
Europe
-­‐
Influencing
the
direc*on
of
healthcare
decision-­‐making’
Dr
Mary
Baker
MBE,
BA,
Hon
DSc
European
Brain
Council
Rome
21st
–
22nd
May,
2015

2.
88
Costs
of
disorders
of
the
brain
• €798
billion
across
30
countries
and
19
groups
of
disorders
• Has
increased
from
€386
billion
in
2004
In
Europe
2010:
European
Neuropsychopharmacology
(2011)
21,
718-­‐779

3.
Distribu*on
of
costs
Total
disorders
of
the
brain
89
Indirect
costs
40%
Direct
healthcare
costs
37%
Direct
non
medical
costs
23%
European
Neuropsychopharmacology
(2011)
21,
718-­‐779

4.
The
world
is
living
longer
90
A
baby
girl
born
in
Japan
has
a
50/50
chance
of
living
100
years

5.
Global
ageing
in
the
21st
century
91
‘The
world
stands
on
the
threshold
of
a
social
transformaCon
-­‐
even
a
revoluCon
-­‐
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

6.
The
changing
role
of
women
92
In
the
1920’s,
a
couple
in
their
80’s
had
44
female
rela*ves
-­‐
14
of
these
did
not
work
outside
the
home
environment
In
the
year
2000,
a
couple
in
their
mid
70’s
had
13
female
rela*ves
-­‐
3
of
these
did
not
work
outside
the
home
environment

7.
Dependency
ra*o
1960
1990
2009/10
Australia
6.4
5.2
4.4
Canada
6.8
5.4
4.5
France
4.8
4.1
3.5
Germany
5.2
4.2
3.0
Italy
6.1
4.0
3.0
Spain
6.9
4.3
3.7
UK
5.0
3.7
3.6
Poland
9.4
5.7
4.9
Average
6.3
4.6
3.8
Dr
Panos
Kanavos
London
School
of
Economics
Fewer
to
care
for
more:
a
declining
dependency
ra*o
93

8. MS
Pa,ent
Summit
-­‐
Rome
94
How
familiar
are
you
with
Health
Economists?
1. I
know
all
about
them
and
what
they
do.
2. I
know
a
li@le
bit
about
their
role.
3. I
have
heard
of
them,
but
don’t
know
what
they
do.
4. I
have
never
heard
of
them
and
don’t
know
what
they
do.

9. 0 10 20 30 40
%
20%
36%
20%
24%
1. I know all about them and what they do.
2. I know a little bit about their role.
3. I have heard of them, but don’t know what they do.
4. I have never heard of them and don’t know what they do.
How familiar are you with health economists?

10.
Polypharmacy
and
co-­‐morbidity
96

11.
Provision
of
culturally
relevant
care
97
The
challenge
of
migra*on

12.
Time
with
the
doctor
98
.....12
minutes

13.
Access
to
medica*on
99
A
very
uneven
playing
field

14.
Counterfeit
medicines
(CMs)
100
• 2011:
in
EU
CMs
risen
to
over
•
27million
• WHO
es*mate
CMs
sales
in
developed
countries
is
1%
and
• 10%
in
developing
countries
• GMP
Colombian
style;
ingredients
include:
Ø Boric
acid
Ø Lead-­‐based
road
paint
Ø Shoe
polish
Ø Brick
dust
Profit
before
pa*ents!

15.
Way
forward
101
Partnership
Communica*on
Innova*on
Trust

16.
Europe
2020
for
a
Healthier
EU
102
Innova*on
Union
To
find
innova,ve
ways
to
promote
ac,ve
and
healthy
ageing
Digital
agenda
for
Europe
Focuses
on
developing
and
using
digital
applica,ons
to
address
social
challenges
Agenda
for
new
skills
and
jobs
Will
help
to
highlight
the
economic
role
of
mental
health
and
the
health
of
the
workforce
European
plaiorm
against
poverty
Boost
efforts
on
health
promo,on
and
preven,on
with
a
focus
on
reducing
health
inequality

17. MS
Pa,ent
Summit
-­‐
Rome
103
What
do
you
know
about
the
European
Semester?
1. I
have
heard
of
it
and
know
what
it
is.
2. I
have
heard
of
it
but
can’t
remember
the
details.
3. I
have
heard
of
it,
but
don’t
know
what
it
is.
4. I
have
never
heard
of
it!

18. 0 20 40 60 80
%
9%
8%
5%
78%
1. I have of it and know what it is
2. I have heard of it but can't remember the details.
3. I have heard of it, but don't know what it is .
4. I have never heard of it!
European Semester?
What do you know about the

19.
Making
it
Happen:
The
European
Semester
105
The
European
Union
has
set
up
a
yearly
cycle
of
economic
policy
coordina,on
called
the
European
Semester
Excellent
Science
Innova*on
Societal
Impact
Outcome
Measures

20.
Funding
106
FP5
(pre
EBC)
Total
in
FP6
FP7
2007
-­‐
2013
Brain
115m
431m
2b
(June
‘13)
Cancer
235m
914m
1,716b
Cardiovascular
54m
232m
554m
EBC
con*nues
to
push
for
beker
funding
of
brain
research

21.
Innova*ve
Medicines
Ini*a*ve:
Joining
forces
in
the
Healthcare
Sector
107

22.
108
IMI
poriolio:
budget
breakdown
up
to
call
11

23.
109
0,0 1,0 2,0 3,0 4,0 5,0
Rheumatology
Pharmacology & Pharmacy
Endocrinology & Metabolism
Neurosciences
Clinical Neurology
Biochemistry & Molecular Biology
Psychiatry
Genetics & Heredity
Research & Experimental Medicine
Immunology
Overall
IMI papers EU papers
average 2.04 average 1.13
Cita*on
impact
2010-­‐1012
19%
of
IMI
publica*ons
are
highly
cited

24.
110
§ 28 countries working together to tackle
neurodegenerative diseases
§ €100 milllion made available since 2011
§ New partnership with European Commission
§ €30 million call on:
§ Longitudinal cohorts
§ Animal and Cell Models
§ Risk and Protective Factors
Opportuni*es
for
research
-­‐
JPND

25.
A
quick
fix
...
111

26.
Lifestyle
choices
112
• Ageing
• Infer*lity
60%
of
NHS
budget
is
spent
on
lifestyle
issues:
• Alcohol
• Obesity
• Sexual
health
• Smoking
• Drug
Addic*on

27.
........
113
‘The
doctor
of
the
future
will
give
no
medicine,
but
will
interest
his
pa*ents
in
the
care
of
the
human
frame,
in
diet,
and
in
the
cause
and
preven*on
of
disease’
Thomas
A
Edison
1847
-­‐
1931

28.
The
Pa*ent’s
Voice
114

29.
The
Regulator
and
the
Payer
115
Professor
Guido
Rasi
Chief
Execu*ve
Officer
European
Medicines
Agency
(EMA)
Professor
David
Haslam
Chairman
Na*onal
Ins*tute
of
Health
&
Clinical
Excellence
(NICE)

30.
New
approach
to
clinical
trials
116

31.
Clinical
trials
–
the
facts
117
• 30%
of
all
clinical
trials
fail
to
recruit
a
single
person
• 85%
of
clinical
trials
face
delays
due
to
limited
par*cipa*on
• Fewer
than
10%
of
Parkinson's
pa*ents
ever
take
part
in
trials,
despite
overwhelming
interest
in
working
with
scien*sts
to
help
speed
treatment
breakthroughs

32.
Harveian
Ora*on
2008
Professor
Sir
Michael
Rawlins
118
“Randomised
controlled
trials
(RCTs),
long
regarded
as
the
'gold
standard'
of
evidence,
have
been
put
on
an
undeserved
pedestal.
Their
appearance
at
the
top
of
"hierarchies"
of
evidence
is
inappropriate;
and
hierarchies,
themselves,
are
illusory
tools
for
assessing
evidence.”
"Hierarchies
akempt
to
replace
judgement
with
an
oversimplis*c,
pseudo-­‐quanta*ve,
assessment
of
the
quality
of
the
available
evidence."

33.
........
119
Arguments
about
the
rela*ve
importance
of
different
kinds
of
evidence
are
an
unnecessary
kind
of
distrac*on.
What
is
needed
instead
is:
•
for
inves*gators
to
con*nue
to
develop
and
improve
their
methodologies
• for
decision-­‐makers
to
avoid
adop*ng
entrenched
posi*ons
about
the
nature
of
evidence
• for
both
to
accept
that
the
interpreta*on
of
evidence
requires
judgement

34.
Future
challenge
for
society
120
• The
need
for
both
the
Regulators
and
the
Payers
to
have
a
collec*ve
impact
on
trial
design,
conduct
and
data
interpreta*on
is
becoming
more
obvious
to
all
stakeholders
• But
nothing
much
is
happening
–
the
divide
remains
• What
happens
if
this
con*nues
for
another
10
years?

35.
Pa*ent
reported
outcomes
121

36. MS
Pa,ent
Summit
-­‐
Rome
122
Have
you
worked
on
projects
with
Universi*es?
1. OYen.
2. Occasionally.
3. Rarely.
4. Never.

37. 0 10 20 30 40 50
%
21%
19%
19%
41%
1. Often.
2. Occasionally.
3. Rarely.
4. Never.
Have you worked on projects with Universities?

38.
Pa*ent
reported
outcomes
124
Develop
a
measurement
acceptable
to
European
Medicines
Agency
(EMA)
and
Food
&
Drug
Administra*on
(FDA)
in
partnership
with:
• Academia
(University
of
Oxford
-­‐
Ox-­‐PAQ
project)
• Regulatory,
payers,
pa*ents
and
their
families
• Clinicians
• Industry

39.
Distress
is
not
enough
125
• Establish
credibility
• Collect
evidence
• Contribute
to
discussions
• Understand
health
technology
assessments
Pa*ent
advocacy
groups
need
to:

40.
HTA
Summer
School
for
Pa*ent
Groups
126
Working for people living with brain disorders
Collabora*on
between
EFNA
and
London
School
of
Economics:
Ini*ated
in
September
2009
–
ongoing,
twice
yearly

41.
The
Pa*ent’s
journey
127
Informa*on
is
needed
from:
• Clinician
-­‐
about
the
disease
• Industry
-­‐
about
the
medica*on
• Pa*ent
non-­‐governmental
organisa*ons
-­‐
about
the
fellow
travellers

42.
A
major
challenge
–
societal
engagement
128
• How
do
we
involve
pa*ents/carers
in
research?
• An
informed
pa*ent
is
a
cost
effec*ve
pa*ent
(Wanless)

43.
Good
Prac*ce
129

44.
Beker
Outcomes
with
Beker
Data
130
Allows
data
sharing
at
a
European
Level
and
addresses
a
widely
recognised
gap
in
data
on:
-­‐
age
and
gender
-­‐
causes
and
triggers
-­‐
availability,
access
and
effec,veness
of
drugs
-­‐
costs
and
resources

45.
European
Network
of
MS
Registries
131
EUReMS
project
co-­‐funded
by
the
Health
Programme
2011-­‐2014
(European
Commission,
DG
Sanco)
Collabora*ve
approach
to
MS
data:
pa*ents’
representa*ves,
Clinicians
and
academics
11
Project
partners
incl.
5
MS
Registers
par*cipa*ng
In
2011

46.
The
future
of
medicine
132
Today
Future
Today
we
diagnose
and
treat
based
on
symptoms
and
a
subjec*ve
interpreta*on
of
symptoms
In
the
future
we
diagnose
and
treat
based
on
biology
and
select
medica*on
based
on
an
objec*ve
evalua*on
of
the
benefit/risk
for
the
individual
pa*ent

47.
Personalised
Medicine
133
P4
Medicine:
Personalised,
Predic*ve,
Preven*ve,
Par*cipatory

48.
mHealth
and
Personalised
Medicine
134

49.
e-­‐Health
and
emerging
technologies
135
e-­‐Health
and
emerging
technologies
• improve
quality
of
care
• increase
pa*ent
autonomy,
mobility
and
safety
• help
clinical
decisions
based
on
computer
modelling
of
diseases
Priori*es
in
e-­‐Health
:
Research
FP7
2007-­‐2013
DG
Connect
Goals
to
offer
e-­‐Health
solu*ons
to:

50.
e-­‐Health
and
emerging
technologies
136
ICT
Solu*ons
for
e-­‐Health
and
e-­‐Inclusion:
• home
monitoring
systems
• health
alert
systems
• molecular
diagnos*c
systems
at
point
of
care
• home
rehabilita*on
• risk
assessment
• electronic
health
records
• computer
models
of
diseases
and
decisional
systems
based
on
models
for
selec*ng
treatments
and
performing
earlier
diagnosis
-­‐
VPH
(virtual
physiological
human)
Priori*es
in
Health
:
Research
FP7
2007-­‐2013
DG
Connect

51.
The
Future
of
the
Mind
137
“We've
learned
more
about
our
brains
in
the
last
15
years
than
in
the
whole
of
human
history
and
new
technologies
like
MRI
means
we're
entering
a
golden
age
of
neuroscience”
The
renowned
physicist
Michio
Kaku,
author
of
"The
Future
of
the
Mind”

52.
Balance
138
PHYSICAL &
BIOTECHNICAL
SCIENCE
ETHICS
SOCIAL
ENVIRONMENT
& POLICY
SOCIAL
SCIENCE
& HUMANITIES
“Sciences
are
the
‘how’.
Humani*es
are
the
‘why’.
I
don’t
think
you
can
have
the
‘how’
without
the
‘why’,”
George
Lucas,
Producer,
Screenwriter
and
Director

53.
From
the
bench
to
the
bedside
139
Rx
HTA
review
~
2
years
New
drug
applica*on
&
review
~
2
years
Preclinical
&
clinical
development
~
8
years

54.
From
the
bench
to
the
bedside
140
Rx
HTA
review
~
2
years
New
drug
applica*on
&
review
~
2
years
Preclinical
&
clinical
development
~
8
years
HTA
review
~
2
years
New
drug
applica*on
&
review
~
2
years
Preclinical
&
clinical
development
~
8
years
Rx
HTA
review
~
2
years
New
drug
applica*on
&
review
~
2
years
Preclinical
&
clinical
development
~
8
years
HTA
review
~
2
years
New
drug
applica*on
&
review
~
2
years
Preclinical
&
clinical
development
~
8
years

55.
From
the
bench
to
the
bedside
141
Rx
HTA
review
~
2
years
New
drug
applica*on
&
review
~
2
years
Preclinical
&
clinical
development
~
8
years

56.
From
the
bench
to
the
bedside
142
Rx
HTA
review
~
2
years
New
drug
applica*on
&
review
~
2
years
Preclinical
&
clinical
development
~
8
years

57.
From
the
bench
to
the
bedside
143
Rx
HTA
review
~
2
years
New
drug
applica*on
&
review
~
2
years
Preclinical
&
clinical
development
~
8
years

58.
Management
of
long
term
chronic
illness
144
• The
ability
to
adapt
and
self
manage
• To
be
able
to
par*cipate
in
social
ac*vity
despite
all
limita*ons

59.
Year
of
the
Brain
145
Protect,
preserve,
develop
and
nurture
our
most
vital
asset:
the
brain
In
Europe
–
2014/2015
An
exci*ng
programme
to
influence
and
improve
the
lives,
the
health
and
the
future
for
many
millions
of
people

60.
Year
of
the
Brain
Our
vision
and
overall
objec*ves
Improve the care of those affected by brain
disease today
and
Ensure that treatments are available to them
as quickly as possible
• Encouraging higher prioritisation of brain
disease in the EU and national health
systems
• Promoting earlier diagnosis and more
equitable access to adequate treatment and
care
YOtB
vision
‘To
protect,
preserve,
develop
and
nurture
our
most
vital
asset:
The
Brain'
Increase investment in research
for future generations
• Securing increased funding for basic
research into the brain
• Strive after optimising regulatory conditions
to incentivise innovation from research to
patient
Educate society about how to nurture and
protect the brain
• Raising awareness of the human and
economic burden of brain disease
• Communicating personal and societal
strategies for preventing brain illness and
brain disability
Securing early and adequate treatment for
the patients affected today
Raising awareness of the challenges with
brain illness
Driving improvements in treatment for
the generations to come
Focusingon
theneedsof
society

61.
Music
and
the
Brain
147
Olga
Bobrovnikova
–
A
piano
diva
living
with
MS

62.
148
What
makers
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
change.’
A
quote
oVen
aWributed
to
Charles
Darwin!

63.
Health
is
Wealth
149
Health
should
be
viewed
as
an
investment
rather
than
a
cost
A
Healthy
Na*on
is
a
Wealthy
Na*on

64. MS
Pa,ent
Summit
-­‐
Rome
150
Friday, May 22nd, 2015 Summit Moderator: Kaz Aston (UK)
08:30
08:40
09:20
10:00
10.40
Welcome & Introduction - Antonella Moretti (AISM, It) & Anna Chiara Rossi (Novartis, It)
Plenary session
• Patient rights in research and treatment - Dr Vittorio Martinelli (It), Aliki Vrienniou (Gr)
• Influencing the direction of healthcare decision-making - Mary Baker (UK)
• The ‘Expert’ Patient - Jean Hardiman-Smith (UK)
Panel discussion
11.15
Break
11.30
Breakout sessions
• Patient rights in research and treatment (co-facilitator - Michele Messmer (It))
• Influencing the direction of healthcare decision-making (co-facilitator - Silvia Traversa (It))
• The ‘Expert’ Patient (co-facilitator - Federica Balzani (It))
12.30
MS World Café
Best Practice Sharing Fair for Patient Advocates
13.00
Buffet Lunch
14:00
Breakout sessions (continued)
15:00
Breakout group feedback to plenary
15:55
Closing Remarks – Antonella Moretti (AISM, It) & Anna Chiara Rossi (Novartis, It)
16.00
Meeting Close
Raising
standards;
The
voice
of
people
with
MS