A pharmaceutical company partnered with Inspire, a social network for health, to better understand idiopathic pulmonary fibrosis (IPF) patients. Through surveys of IPF patients on Inspire, the company found that around 70% said their biggest issue was the "lack of therapies which make me feel better." When asked about clinical trial participation, 80% saw the comprehensive evaluation as a benefit, while around 20% saw the chance of a placebo as a drawback. The presentation argues that social networks provide a way for patients, particularly those with rare diseases, to be engaged, informed and have their voices heard by industry to accelerate research.

1. Strategies and Tactics to Leverage
Social and Digital Media in
Clinical Research
Brian Loew
CEO
Inspire
brian@inspire.com
@brianloew

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3. About Inspire
Inspire (www.inspire.com) is the social
network for health. Our online community of
500,000 patients and caregivers, organized by
medical condition, helps industry connect with
patients in order to accelerate and improve
research.

4. Case study
In order to better understand
Idiopathic Pulmonary Fibrosis patients,
a pharmaceutical company partnered
with Inspire.

6. About 70% of respondents
said that “lack of therapies
which make me feel better”
was a very troubling issue in
trying to manage their IPF.

19. How would the following factors influence
your decision to participate in a clinical trial?
- 80% said that they saw as the benefit the promised
comprehensive evaluation of their IPF and related
conditions.
- 41% said it was “neither a benefit or a drawback
that they may be on a placebo. About 20% said the
chance of being on placebo was a drawback to
participating in a trial.

20. The benefits of social networks
• In the best online communities — particularly
rare disease communities — patients are
engaged, informed and passionate.
• Many patients want pathways to clinical
research.
• Many patients want to be heard.

21. The voice of the IPF patient
“By you posting your experience, someone
else who might brush off even looking into
(certain IPF drugs) might change their mind
because of your words and discuss it with their
doctor.”
Florida woman, 58

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