Presentation by Inspire CEO Brian Loew to the Global Innovation in Clinical Research & Operations Summit, Princeton, NJ, Oct. 23, 2013.

1. Trialing
successful
social
media
strategies
in
clinical
research
&
development
Brian
Loew,
CEO,
Inspire
Global
InnovaDon
in
Clinical
Research
&
Outsourcing
Princeton,
NJ
Oct.
22-­‐23,
2013
brian@inspire.com
h"p://corp.inspire.com

2. Benefits
of
communiDes
for
paDents
! Helps
geographically-­‐dispersed
paDents
to
connect
with
one
another
! A
way
to
iniDate
and
promote
research
! A
place
to
share
experiences
and
knowledge,
and
to
help
themselves
by
helping
others
brian@inspire.com
h"p://corp.inspire.com
2

3. PaDent
experiences
with
rare
disease
How
knowledgeable
are
your
medical
professionals
about
your
rare
condiDon?
21%
(119)
37%
(207)
32%
(175)
9%
(51)
0%
(2)
Highly
knowledgeable
Fairly
knowledgeable
Barely
knowledgeable
Not
knowledgeable
whatsoever
Don’t
see
medical
professionals
regularly
How
effecDve
are
your
treatments
in
managing
your
rare
condiDons?
17%
(94)
41%
(226)
25%
(141)
4%
(21)
13%
(72)
Highly
effecDve
Moderately
effecDve
Minimally
effecDve
Not
effecDve
or
making
things
worse
Not
receiving
treatments
How
effecDve
does
insurance
cover
care
for
your
rare
condiDons?
19%
(103)
43%
(238)
20%
(111)
7%
(39)
11%
(63)
Completely
Mostly
Somewhat
Barely
Not
at
all/I
have
no
coverage
brian@inspire.com
h"p://corp.inspire.com

4. PaDent
experiences
with
rare
disease
Are
there
FDA
approved
treatments
for
your
rare
condiDons?
32%
(176)
31%
(172)
37%
(206)
Yes
No
Not
sure
Are
there
off-­‐label
treatments
for
your
rare
condiDons?
28%
(157)
27%
(149)
45%
(248)
Yes
No
Not
sure
Are
you
aware
of
anyone
doing
research
into
the
rare
condiDons
that
affect
you?
53%
(294)
27%
(151)
20%
(109)
Yes
No
Not
sure
brian@inspire.com
h"p://corp.inspire.com
4

5. How
paDents
with
neurofibromatosis
use
social
networks
About
the
Study
Healthcare
market
research
and
strategic
advisory
firm
Manha"an
Research,
and
online
paDent
community
network
Inspire,
in
alliance
with
paDent
advocacy
organizaDon
Neurofibromatosis
Network,
partnered
on
a
study
to
explore
the
role
of
social
media
in
the
lives
of
neurofibromatosis
paDent
and
caregivers.
The
study
was
conducted
online
among
161
paDents
and
57
caregivers
from
the
Inspire/
Neurofibromatosis
Network’s
Support
Community
(h"p://www.inspire.com/groups/neurofibromatosis-­‐network/)
in
Q2
2012.
About
Neurofibromatosis
Neurofibromatosis
(NF)
is
an
incurable
geneDc
disorder
of
the
nervous
system
which
causes
tumors
to
form
on
the
nerves
anywhere
in
the
body
at
any
Dme.
NF
is
one
of
the
most
common
geneDc
disorders
in
the
United
States,
affecDng
more
than
100,000
Americans.
brian@inspire.com
h"p://corp.inspire.com
5

6. How
paDents
with
neurofibromatosis
use
social
networks
brian@inspire.com
h"p://corp.inspire.com
6

7. PaDents
driving
research:
The
“SCAD
Ladies”
TradiDonal
Research
Methods
Turned
Upside
Down:
The
Untapped
PotenDal
of
“PaDent-­‐IniDated”
Research
in
the
Study
of
Rare
Diseases
Sharonne
N.
Hayes,
MD
“Most
rare
disease
pa-ents
search
for
years
and
visit
many
doctors
before
they
are
properly
diagnosed.”
brian@inspire.com
h"p://corp.inspire.com
“This
is
not
just
a
story
about
what
they
were
able
to
accomplish,
but
also
about
the
power
of
pa-ent
groups
and
of
social
networking”

8. brian@inspire.com
h"p://corp.inspire.com

9. In
conclusion
!
Value is created by patients -- not (only) through
‘traditional’ channels.
!
Many patients want to contribute to research, but patients
need better pathways to access researchers.
!
Technology matters a great deal.
!
Technology doesn’t matter at all.
brian@inspire.com
h"p://corp.inspire.com
9

10. Thank
you
Brian
Loew
CEO
Inspire
brian@inspire.com
h"p://corp.inspire.com
brian@inspire.com
h"p://corp.inspire.com
10