The document discusses a 2014 patient and caregiver survey conducted by Inspire, revealing patient preferences regarding e-health tools and adherence technologies. It highlights that while patients are generally open to various online tools for managing health, many are hesitant to adopt mobile apps due to privacy issues and lack of smartphone ownership. Additionally, the insights indicate a preference for electronic materials over traditional resources, showcasing the necessity for trust and tailored communication between patients and healthcare providers.

1. What Do Patients Really Want Out Of
Adherence Technology?
PAAS
June 25, 2015

2. 2
► Background: Inspire and 2014 Patient and
Caregiver Survey
► Survey Insights
• Patient Interests in and Willingness to Use e-Health
Tools
• Patient Recommendations for Effective Adherence
Technologies
• Ways to Optimize Technology Platforms and e-Health
Solutions
► Q & A
Agenda
5 minutes
25 minutes
10 minutes

3. Background: Inspire and 2014 Patient and
Caregiver Survey

4. 4
Inspire Background
Social network for
PTs and CGs:
•~630,000 members
•200+ communities
•~110 advocacy org.
partners
‘Born’ in 2005
Live in 2006
Member growth
through:
•Organic search
•Advocacy groups
•Miscellaneous
Goal was to connect
patients & caregivers
with one another
AND connect them
directly with pharma
(clinical trials)

5. 5
 Purpose: To bring the perspectives of e-
patients to life on a large scale
 Launch: After several months of planning
and design, Inspire began sending survey
invitation emails to its members on
December 11, 2014.
 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.
 Closing: The survey was officially closed
on January 8, 2015.
 Impact: During the month in which the
survey was available, 13,633 Inspire
members completed the assessment.
Annual Survey Background

6. 6
 Inspire members (and survey respondents) are primarily patients and
caregivers with the inclusion of some ‘health advocates’
 Respondents are primarily from the U.S. but do represent 100 countries
and 6 continents
 Average age of survey respondents was 53.6
 Gender split was largely (~75%) female and only ~25% male
 Using ICD-9/10 codes as a guide for categorization, the top-5 most
common health areas represented by survey respondents were:
 Oncology (5,557 respondents)
 Autoimmune (3,793 respondents)
 Metabolic (2,881 respondents)
 Neurological (2,625 respondents)
 Respiratory (2,214 respondents)
Annual Survey Respondent Overview

7. Survey Insights: Patient Interests in and
Willingness to Use e-Health Tools

8. 8
 Patients reported turning to a number of (primarily) online sources to
obtain information about and better understand their health conditions
Seeking Medical Information
1%
3%
11%
12%
22%
24%
27%
31%
38%
42%
49%
51%
76%
78%
0% 50% 100%
None
Other
Videos
In-person patient support groups
Support and advocacy groups
Nurses
Other patients
Friends and family
Materials provided by the doctor’s office
Books or magazines
Online support communities
Medical/scientific articles
Online search engines (e.g., Google, Bing)
Condition-specific websites or blogs
Sources of information used for health conditions
% of Responses
Condition-specific
websites or blogs
was also reported
to be the most
helpful source of
information used to
better understand
patients’ health
conditions

9. 9
 Although patients widely use online tools to help them better understand
their health conditions, mobile apps are not as strongly sought after
solutions
Incidence of Mobile App Usage
9%
8%
12%
72%
Frequency of mobile app usage for
healthcare
Always Frequently Sometimes Never
While mobile app usage is more
common among younger patients
than older ones, this is still a largely
untapped frontier in healthcare
Key drivers limiting use of mobile apps
for healthcare:
1) Lack of ownership of a
smartphone (finances), and
1) Privacy concerns

10. 10
 Patients who use smartphone apps to manage their conditions do so to:
How Mobile Apps are Used
- Help prepare for doctor’s visits……………………..
- Search for information online……………………….
- Set up dosing reminders……………………………….
- Take notes at MD’s office………………………………
- Take photos of symptoms……………………………..
- Other……………………………………………………………….
Women use their smartphone more frequently
across each of these options than men
59%
56%
55%
35%
30%
5%
‘Respiratory’ patients are most likely to use a
smartphone to “Prep for MD appts”, “Search for
information online” and “Take notes at
physician's office”
Autoimmune patients are most likely to use a
smartphone to “Take photos of symptoms”

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 Of the 72% of survey respondents who have never used a smartphone for
their health conditions, less than half felt that, in theory, this type of tool
would be helpful in managing their health conditions
Limitations to Mobile App Usage
‘Autoimmune’ and ‘Neurological’
patients are most likely to be
receptive to using smartphone apps
Across patient age groups, the idea of
using a smartphone app to help
patients decreases in prevalence as
younger respondents were almost
twice as likely to answer affirmatively
than those 65+
Women think that a smartphone app
would be a helpful tool more than
men

12. Survey Insights: Patient Recommendations
for Effective Adherence Technologies

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 While they are open to a variety of tools/materials to use with their
physicians, patients most widely preferred electronic/online materials
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
condition
Support materials for
friends/family
members detailing
your condition and its
symptoms
Printed, Detailed
Symptom Tracker
Tips/tactics around
better ways to
communicate with
your physician(s)
Recommended tools to help patients during doctor’s visits
% Responses

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 Even among this 'engaged' population of patients and caregivers who have
turned to the internet in search of information and support for their
condition(s), technology-based solutions are not always what's desired
Adherence Tool Considerations
“I look for patient-driven information and
research rather than info coming from
pharma companies.”
The need for trust
“I'm old school I like everything on paper
in front of me. I never go on line
everyone’s cancer is treated differently if I
would go on line I would have myself
dead and buried I stay off”
“Big Pharma is evil. Period.”
“Have you ever been to a Drs apt lately??
Aside from your fifteen minute meeting
with a dr who. Please tell me who. What
dr gives out helpful advice to better your
health??”
In physician communication research
conducted several years ago in the Type II
Diabetes market, it was found that
physicians were trying to ‘empower’ their
patients to be adherent to treatment…
Client Case Study: “An arm and a leg”
…However, they were focusing on the
complications associated with T2D…
…Everything from Increased Medication
Burden to Neuropathy to Loss of Limbs to
Stroke and Death were mentioned by MDs
to their ‘at-risk’ patients…
…Although these are the realities of T2D,
scare tactics are not necessarily the best
motivator

15. Survey Insights: Ways to Optimize
Technology Platforms and e-Health Solutions

16. 16
 Currently in a pilot test with a Top-10 pharma client, Inspire is exploring
targeted messaging – providing MLR-approved emails to community
members after they post an appropriate message on Inspire
Targeted Messaging
Very Interested
Somewhat
Interested
Somewhat
Uninterested
Not at all
InterestedNeutral
23% 27% 23% 8% 20%

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 While these patients use a variety of social media outlets personally, they
typically do not turn to these same 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

18. Q & A