Inspire is a social network connecting patients, caregivers, and pharmaceutical companies, emphasizing the importance of communication between patients and doctors. The document highlights patient-driven research and the need for shared decision-making in healthcare, as many patients actively seek information about treatments online. It suggests that fostering better communication tools and educational materials can enhance patient-physician relationships and improve healthcare outcomes.

1. Don’t Fail to Communicate:
Identify Patient Perceptions of
Communication Gaps with
Physicians
Brian Loew, Inspire
Sept. 10, 2014

2. A social network, organized by
health condition, that connects
pharmaceutical companies with
patients and caregivers in a safe,
permission-based manner.
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Inspire Overview
Click to link to a live feed of
activity across Inspire’s Oncology
Communities
• 520,000* members
(+12K/month)
• 207 health communities
• 2,500,000 visits/month
• 105 patient advocacy partners
• 700,000 unique visitors/month
• 6,376,000 posts (+4K/day)
*As of September 2014

3. • For patients and caregivers
(members), Inspire offers a high
quality, health-focused, social
network, organized by disease
area
• For patient advocacy partners,
Inspire offers a free, branded,
online community platform
• For pharmaceutical companies,
Inspire offers access to engage
with members for clinical trial,
market research, and/or
marketing initiatives
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“Coming here has greatly helped me get the
answers to many questions I’ve had.”

4. • Exclusive relationships with
105 national patient advocacy
organizations.
• National patient advocacy
organizations provide
authority and trust and play
an important role in organic
search and growth of
members.
• Inspire owns the
communities, as well as
member data in the
communities, and has
exclusive access to members.
Click here for a complete list of Inspire partners
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Inspire Patient Advocacy Programs

5. 5
Goals
- Examine how patients in online communities
discuss the topic of side effects and other drug
risks
- Identify what patients really value and crave
in their patient-doctor interactions
- Define the role of industry-sponsored patient
education

6. Psoriasis patients: actively researching treatments
6
Patients from our online community frequently research the
medications they are given, most often looking for other
patients’ experiences with them
“I look at the official drug's website for any side
effects. I also learn as much as possible about the
drug. I also Google and see what I can find on
somewhat reputable sites. I always talk to my doctor
about what I find.”
- Female, 18-30 years old

7. 7
More insights from psoriasis patients
“Usually the various psoriasis boards where I can get
feedback from actual patients. Always seems like a better
source of information than from journals or physicians
since it is so much different being the person living daily
with psoriasis than just studying it.”
Male – 31-40 years old
Always after getting the script to double
check side effects and interactions…
Epocrates, it's up to date and an app on
my phone, easy, accurate.”
Female – 51-60 years old

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A goal: Shared decision making
Most patients surveyed want to be
actively involved in the decision-making
process around their care, and
it is important for oncologists to
explore this with them.

9. 9
Inspire cancer survey:
The meaning of personalized healthcare – a
whitepaper, sponsored by AstraZeneca, in
partnership with pharmaphorum media

10. 10
Time, and caring:
Good communication underpins positive
outcomes in oncology and beyond
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Several potential triggers for stopping treatment
(From Inspire survey of advanced breast cancer patients)
“My oncologist and I have a great relationship, and
when he tells me we're done, I will accept it. Until
then, I will be fighting like a mother even when I feel
like giving up.”
“When my oncologist says my current treatment
isn’t working and there are no more options.”
“When pain from disease or side effects is too severe.
Especially if I have already been lucky enough to have
been alive with MBC for a long time.”
“I always thought that I would do every chemo
possible to stay alive, but after a rough summer in
chemo and more progression, I am changing my
mind.”

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And when the disease isn’t visible:
From Inspire’s survey of ‘invisible illnesses’ patients,
we found that 85% of those who took the survey
(n=231) felt that they at least "sometimes"
had difficulty in getting medical professionals to
believe their self-reported symptom/pain levels.
These patients need some validation of their self-assessments
and want to be seen as having a key
stake in the management of these various
conditions we assessed (such as lupus, fibromyalgia,
migraine).

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What can pharma supply patients?
From our “invisible illnesses” survey, apx. 75% of
patients indicated that some type of symptom tracker
(either electronic or printed) would be helpful.
The same amount of patients also felt that having
"Tips/tactics around better ways to communicate with
your physician(s)" would be beneficial.

14. Industry-sponsored patient education
Example: Inspire partnered with a pharma company
and multiple patient advocacy organizations to
produce a Webinar featuring leading
neuroendocrine tumor oncologist Eric Liu, MD.
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Patients search online often because they have to do so
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A drive by rare disease patients for answers
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Ease of discovery of “others like you” affects traditional physician/patient
relationship
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Online privacy and patients

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Takeaways
- Educational materials that facilitate better
patient/physician communication can help
improve patient/physician relations.
- More patients affected by diseases are
using social networks to gather health
information.
- More patients want physicians to treat
patients like partners.

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Takeaways, continued
Many patients want to contribute to
research, but patients need better
pathways to access researchers.
Technology that aids patients and
physicians research diseases matters a
great deal.

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Thank you
Brian Loew
CEO
Inspire
Twitter: @brianloew
brian@inspire.com