Inspire teamed with the trade organization Biotechnology Industry Organization for the seminar, “Connecting With the Empowered Patient in the Digital Age,” held Feb. 2015 at BIO headquarters in Washington, DC. The event brought together leaders from the patient advocacy community and life sciences industry to discuss how social media can be utilized to empower patients and engage advocates. Inspire's Research Director Dave Taylor led the session, "Voice of the Empowered Patient: An Analysis of the Inspire Annual Survey."

1. Voice of the Empowered Patient:
An Analysis of the Inspire Annual Survey
BIO Briefing
February 4, 2015

2. 2
► 2014 Inspire Annual Patient and Caregiver Survey
Background
► Survey Insights
• Interacting with Physicians
• Obtaining Information
• Interacting with the Industry
• Desired Tools for Healthcare in the Future
► Hearing the Voice of the Empowered Patient:
Firsthand Accounts
• Katherine Leon, rare disease patient advocate and Co-
founder, SCAD Alliance
• Joe Murphy, patient advocate and colon cancer survivor
Agenda
5 minutes
15 minutes
10 minutes

3. 2014 Inspire Annual Patient and
Caregiver Survey Background

4. 4
Ø Purpose: To bring the perspectives of e-
patients to life on a large scale
Ø Launch: After several months of planning
and design, Inspire began sending survey
invitation emails to its members on
December 11, 2014.
Ø Fielding: In order to reach the ~490,000
members who have opted to receive such
communications, invitations had to be sent
evenly through December 23rd.
Ø Closing: The survey was officially closed
on January 8, 2015.
Ø Impact: During the month in which the
survey was available, 13,633 Inspire
members completed the assessment.
Annual Survey Background

5. Survey Insights: Interacting with
Physicians

6. 6
Ø When going to see their doctor, the empowered patients of Inspire are
PREPARED
Interacting with Physicians
30%
25%
31%
14%
0%
20%
40%
60%
80%
100%
Always
Frequently
Some;mes
Never
A"end
doctor's
appointments
with
someone
else
%
of
Responses
33%
30%
28%
9%
0%
20%
40%
60%
80%
100%
Always
Frequently
Some;mes
Never
Brings
prepared
notes/ques9ons
to
doctor's
appointments
%
of
Responses

7. 7
Ø The empowered patient plays a large role in making treatment decisions
Making Treatment Decisions
In
collabora9on:
69%
Pa9ent-­‐driven:
20%
MD-­‐driven:
11%

8. 8
Ø The empowered patient will ask about new treatments and often does so
frequently
Pursuing New Treatments
52%
35%
5%
8%
Who
ini9ates
new
treatment
discussions
You
A
doctor
Other
No
new
Tx
discussions
29%
16%
31%
13%
11%
Frequency
of
new
treatment
discussions
At
every
visit
Every
other
visit
A
couple
;mes
a
year
Once
a
year
Never

9. Survey Insights: Obtaining Information

10. 10
Ø Empowered patients often use a number of online sources to obtain
information about their health conditions
Seeking Medical Information
1%
3%
11%
12%
22%
24%
27%
31%
38%
42%
49%
51%
76%
78%
0%
20%
40%
60%
80%
100%
None
Other
Videos
In-­‐person
pa;ent
support
groups
Support
and
advocacy
groups
Nurses
Other
pa;ents
Friends
and
family
Materials
provided
by
the
doctor’s
office
Books
or
magazines
Online
support
communi;es
Medical/scien;fic
ar;cles
Online
search
engines
(e.g.,
Google,
Bing)
Condi;on-­‐specific
websites
or
blogs
Sources
of
informa9on
used
for
health
condi9ons
%
of
Responses
Condi;on-­‐specific
websites
or
blogs
was
also
reported
to
be
the
most
helpful
source
of
informa;on
used
to
be_er
understand
members’
health
condi;ons

11. 11
Ø While these patients use a variety of social media outlets personally, they
typically do not turn to these sources for their health conditions
Social Media Usage
23%
65%
25%
11%
19%
0
25%
14%
40%
4%
13%
21%
25%
18%
1%
2%
28%
4%
2%
14%
4%
33%
0%
20%
40%
60%
80%
100%
Personal
Use
Medical
Use

12. Survey Insights: Interacting with the
Industry

13. 13
Ø Although a patient-centric model is where healthcare in the U.S. is going,
there are serious inroads that must be made to strengthen the relationship
between patients and the industry
Relationship with Pharma
10%
17%
37%
35%
For
the
medica9ons
you
take,
how
many
do
you
know
the
manufacturer
All
Most
Some
None
13%
of
respondents
felt
like
they
indeed
had
a
rela;onship
with
the
companies
that
made
their
medica;ons;
at
best,
it
is
said
to
be
a
‘limited’
connec;on
In
contrast,
40%
of
respondents
indicated
they
have
a
rela;onship
with
their
pharmacist;
in
these
cases,
the
connec;on
was
considered
to
be
‘good’

14. 14
Ø Half of all respondents reported experiencing difficulties with the
affordability/cost of their treatments at some point in time
Challenges with Treatment Costs
29%
47%
56%
60%
0%
50%
100%
Cost
of
rou;ne
lab
monitoring
Out
of
pocket
costs
(e.g.
travel
&
logis;cs)
Paying
for
other
medica;ons
related
to
Tx
Paying
for
treatments
Aspects
in
which
PTs
had
cost
issues
%
Responses
Premiums:
55%
Copays:
44%
Ancillary
Treatment
Costs:
37%
Insurance-­‐Driven
Generic
Switches:
60%
Recent
cost
issues…

15. Survey Insights: Desired Tools for
Healthcare in the Future

16. 16
Ø While these empowered patients would be open to a number of tools/
materials to use with their physicians, electronic/online materials are most
widely preferred
Suggested Tools for Improved Healthcare
59%
57%
47%
42%
40%
0%
20%
40%
60%
80%
100%
Electronic,
Detailed
Symptom
Tracker
Access
to
online
webinars
or
in-­‐person
conferences/speaker
sessions
to
learn
more
about
your
condi;on
Support
materials
for
friends/family
members
detailing
your
condi;on
and
its
symptoms
Printed,
Detailed
Symptom
Tracker
Tips/tac;cs
around
be_er
ways
to
communicate
with
your
physician(s)
Recommended
tools
to
help
pa9ents
during
doctor’s
visits
%
Responses

17. 17
Ø Although these patients and caregivers endorsed the availability of
electronic/online tools to help them better manage their health conditions,
mobile apps are not as strongly sought after solutions
Mobile App Usage
9%
8%
12%
72%
Frequency
of
mobile
app
usage
for
healthcare
Always
Frequently
Some;mes
Never
Pa;ents
who
use
smartphone
apps
to
manage
their
condi;ons
do
so
to:
-­‐ Help
prepare
for
doctor’s
visits
-­‐ Search
for
informa;on
online
-­‐ Set
up
dosing
reminders
Among
those
who
do
not
use
smartphone
apps,
only
43%
felt
that,
in
theory,
this
type
of
tool
would
be
helpful
in
managing
their
health
condi;ons

18. Hearing the Voice of the Empowered
Patient: Firsthand Accounts