Trialing successful social media strategies in clinical research & development

[email protected] h"p://corp.inspire.com [email protected] h"p://corp.inspire.com

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


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

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PaDent experiences with rare disease How knowledgeable are your medical professionals about your rare condiDon?

How effecDve are your treatments in managing your rare condiDons?

How effecDve does insurance cover care for your rare condiDons?

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

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

19% (103) 43% (238) 20% (111)

7% (39) 11% (63)

Completely Mostly Somewhat Barely Not at all/I have no coverage

[email protected] h"p://corp.inspire.com [email protected] h"p://corp.inspire.com 4

PaDent experiences with rare disease Are there FDA approved treatments for your rare condiDons?

Are there off-‐label treatments for your rare condiDons?

Are you aware of anyone doing research into the rare condiDons that affect you?

32% (176) 31% (172) 37% (206)

Yes No Not sure

28% (157) 27% (149) 45% (248)

53% (294) 27% (151) 20% (109)

Yes No Not sure

Yes No Not sure


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.


How paDents with neurofibromatosis use social networks


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.”

“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”



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!   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.

In conclusion


Thank you

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Brian Loew CEO Inspire [email protected] h"p://corp.inspire.com

Business

Trialing successful social media strategies in clinical research & development