MS Patient Summit 2015, Rome: Patient Rights - Feedback to Plenary

1. Pa#ent
rights
in
research
and
treatment
Feedback
to
Plenary

2. Main
issues
and
discussion
topics
1. Lack
of
informa#on
on
research
process
2. Problem
of
too
few
people
par#cipa#ng
in
research
is
linked
to
lack
of
informa#on
(what
studies
are
on-­‐going
in
my
country,
where,
am
I
eligible,
what
are
my
rights?)
3. Conflict
between
pa#ent
goal
(cure)
vs
reality
(true
benefit,
risks)
4. News
drugs
mean
new
challenges
(stay
on
current
drug,
change
to
new
drug,
do
I
really
understand
the
implica#ons,
ethical
issues)
5. Access
to
DMT
and
to
symptoma#c
therapies
differs
across
countries
6. Neurologist-­‐pa#ent
partnership
needs
to
be
beQer
defined,
shared,
promoted
7. Media
communicates
only
posi#ve
and
some#mes
unrealis#c/untrue
messages
aTer
studies
are
published
8. Right
to
personalized
medicine
–
a
difficult
endeavor
for
neurologists
once
person
has
received
«
biased
informa#on
»
9. Risk
vs.
Benefit
–
it’s
a
judgment
not
an
objec#ve
conclusion
(benefit
for
the
pa#ent,
family,
what
is
valuable,what
am
I
willing
to
risk
personally?)
MS
Pa#ent
Summit
-­‐
Rome
201
Pa5ent
rights
in
research
and
treatment

3. What
needs
to
be
done?
1. MS
organisa#ons
need
to
be
link
between
researchers
and
people
with
MS
–
informa#on,
contacts,
linking
people
to
studies
2. Educate
clinicians/researchers
on
involving
people
in
research,
communica#ng
their
research
3. People
with
MS
can
be
examples
to
others
(if
you’ve
par#cipated
in
research,
find
ways
to
tell
others
about
it)
4. MS
organisa#ons,
PAG,
pharma,
country
level
ethical
commiQees,neurological
socieites
have
to
have
role
in
assuring
ethics
in
repor#ng
research
results
–
messages
in
the
media
clear,
honest,
realis#c
5. Need
to
understand
role
of
e#cal
commiQee
6. Find
ways
to
involve
people
with
MS
in
research
process
(scien#fic
commiQee)
7. Each
country
needs
to
have
a
census
of
the
MS
popula#on
and
not
rely
on
es#mates
MS
Pa#ent
Summit
-­‐
Rome
202
Pa5ent
rights
in
research
and
treatment

4. Examples
of
good
prac5ce
1. EMSP
Under
Pressure
Campaign
(showing
differences
across
countries
on
serious
impact
of
lack
of
access
to
therapies)
2. EurMS
Registry
3. MS
Awareness
Day
in
the
European
Parliament
4. MS
Barometer
MS
Pa#ent
Summit
-­‐
Rome
203
Pa5ent
rights
in
research
and
treatment

5. Proposal
-­‐
Ac5on
Plan
1. MS
organisa#ons
need
to
collect
data
on
access/availability
of
therapies
in
each
country
and
healthcare
professionals
need
to
collect
accurate
data
on
all
pa#ents
2. Understand
why
specific
regula#ons
exist,
what
are
they
based
on?
3. Agree
on
a
common
posi#on
on
which
to
base
lobbying
plan
MS
Pa#ent
Summit
-­‐
Rome
204
Pa5ent
rights
in
research
and
treatment