Experiences  from  Engagement  with  pCODR  

Deb  Maskens  

Experience  with  Pa;ent  Experience  

•  pCODR  Pa;ent  Evidence  Process  – Significant  amount  of  work  for  pa;ent  orgs  – pCODR  expects  input  to  be:  •  Current,  Canadian*,  Specific  to  new  molecule  •  Also:  rural/urban,  pan-­‐Canadian,  online/offline,  representa;ve  of  socio-­‐economic  spectrum,  indigenous/northern,  balanced  +ve/-­‐ve,  …  •  Techniques  suggested:  

–  Online  surveys,  but  also:  focus  groups,  IDIs  (one  on  one  interviews),  telephone  interviews,  outreach  to  HCPs.  

Cancer  organiza,ons  today:  •    Wide  range;  many  founded  around  “body  parts”  •    Personalized  medicine  =  ALK,  MET,  BRAF  muta;ons  •    Future?  •  How  do  we  collaborate?    

pCODR  con;nuing  to  evolve…  

Prac;cal  Tips  

•  Ensure  your  Board  is  fully  aware…  •  Start  EARLY:  – 6  months  before  expected  submission  – Beyond  the  survey:  •  An;cipate  the  objec;ons;  make  the  case  •  Collaborate  with  other  Cdn  organiza;ons  

–  Does  the  drug  have  other  indica;ons?  •  Collaborate  interna;onally  

–  Towards  a  “Global  Pa;ent  Evidence  Submission”…  

Future  direc;ons…  

•  Value  Frameworks  for  cancer  drugs  – How  do  PATIENTS  define  “value”?  

•  Weigh;ng  of  pa;ent  evidence  submissions  – Levels  of  evidence  /credibility/  influence  – Are  we  was;ng  our  ;me  on  low  level  evidence?  

•  Role  of  “Pa;ent”  or  “Public”  members  on  commieees  –  Is  that  best  prac;ce  “pa;ent  engagement”?  

Thank  you