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Trialing successful social media strategies in clinical research & development
 

Trialing successful social media strategies in clinical research & development

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Presentation by Inspire CEO Brian Loew to the Global Innovation in Clinical Research & Operations Summit, Princeton, NJ, Oct. 23, 2013.

Presentation by Inspire CEO Brian Loew to the Global Innovation in Clinical Research & Operations Summit, Princeton, NJ, Oct. 23, 2013.

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    Trialing successful social media strategies in clinical research & development Trialing successful social media strategies in clinical research & development Presentation Transcript

    • 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     brian@inspire.com   h"p://corp.inspire.com  
    • 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   brian@inspire.com   h"p://corp.inspire.com   2  
    • PaDent  experiences  with  rare  disease   How  knowledgeable  are  your  medical  professionals  about  your  rare  condiDon?   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   How  effecDve  are  your  treatments  in  managing  your  rare  condiDons?   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   How  effecDve  does  insurance  cover  care  for  your  rare  condiDons?   19%  (103)   43%  (238)   20%  (111)   7%  (39)   11%  (63)   Completely   Mostly   Somewhat   Barely   Not  at  all/I  have  no  coverage   brian@inspire.com   h"p://corp.inspire.com  
    • PaDent  experiences  with  rare  disease   Are  there  FDA  approved  treatments  for  your  rare  condiDons?   32%  (176)   31%  (172)   37%  (206)   Yes   No   Not  sure   Are  there  off-­‐label  treatments  for  your  rare  condiDons?   28%  (157)   27%  (149)   45%  (248)   Yes   No   Not  sure   Are  you  aware  of  anyone  doing  research  into  the  rare  condiDons  that  affect  you?   53%  (294)   27%  (151)   20%  (109)   Yes   No   Not  sure   brian@inspire.com   h"p://corp.inspire.com   4
    • 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.     brian@inspire.com   h"p://corp.inspire.com   5  
    • How  paDents  with  neurofibromatosis  use     social  networks   brian@inspire.com   h"p://corp.inspire.com   6  
    • 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.”   brian@inspire.com   h"p://corp.inspire.com   “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”  
    • brian@inspire.com   h"p://corp.inspire.com  
    • In  conclusion   !  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. brian@inspire.com   h"p://corp.inspire.com   9
    • Thank  you     Brian  Loew   CEO   Inspire     brian@inspire.com   h"p://corp.inspire.com   brian@inspire.com   h"p://corp.inspire.com   10