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Clinical & Patient Perspective on the NCI PS-OC by Collyar
 

Clinical & Patient Perspective on the NCI PS-OC by Collyar

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Presentation given at the August 2012 Princeton site review for the Physical Sciences Oncology Center (PS-OC) grant from the National Cancer Institute (NCI). ...

Presentation given at the August 2012 Princeton site review for the Physical Sciences Oncology Center (PS-OC) grant from the National Cancer Institute (NCI).
Some of these slide may not be self-explanatory, so contact me if you have questions, or post them on the discussion in the LinkedIn NCI Office of Physical Sciences - Oncology group at http://www.linkedin.com/groups?home=&gid=4536998&trk=anet_ug_hm.

NOTE: I have a whole series called "Words that Matter". This series features common terms that different fields interpret in entirely different ways.

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    Clinical & Patient Perspective on the NCI PS-OC by Collyar Clinical & Patient Perspective on the NCI PS-OC by Collyar Document Transcript

    • 1  
    • 2  
    • There  are  important  consequences  to  not  ge4ng  valid  answers  to  cancer  advances.    Here  are  a  few  from  a  pa<ent  perspec<ve.    Please  remember  the  next  <me  you  look  at  Kaplan-­‐Meier  curves,  they  represent  real  people.   3  
    • Enrolling  Pa<ents  in  Clinical  Trials   10/17/09   People  who  have  never  been  exposed  to  the  intricacies  of  cancer  treatment   or  the  oncology  medical  process  are  overwhelmed  by  the  language  used  and   the  decisions  that  must  be  made.  PAIR:  Pa<ent  Advocates  In  Research   4  
    • Making  Sense  of  Genomics  while  Protec<ng   6/11/12  People   It’s  <me  to  encompass  all  of  the  different  ‘systems’  that  make  up  one  human!   It  clearly  hasn’t  worked  to  segment  out  grants  and  studies  to  the  point  of  looking  at   one  small  piece  of  the  overall  human  puzzle.    Let’s  look  at  how  each  part  throughout   the  human  system.  ©  PAIR:  Pa<ent  Advocates  In  Research     5  
    • It’s  also  clear  from  the  ‘outside  looking  in’  that  physicists  and  biologists/cancer  researchers  (and  pa<ent  advocates!)  ask  ‘Why’  &  challenge  assump<ons.  Some  also  bring  up  uncomfortable  issues  and  are  never  sa<sfied.    It’s  now  <me  to  focus  on  how  to  take  new  thinking  and  data  from  different  fields  and  focus  on  ac<ons  and  steps  that  can  lead  us  to  beber  results  for  people.    I  don’t  mean  to  insult  anyone,  but  I’m  changing  the  quip  “it’s  the  economy,  stupid!”  to  help  us  focus  on  the  end  results  we’re  really  aeer.     6  
    • I  have  a  whole  series  of  words  that  are  commonly  used  by  everyone,  but  mean  very  different  things.    Here  is  an  example  of  how  the  medical/scien<fic  community  thinks  about  cure  (5  year  survival  rate)  vs.  how  pa<ents  and  people  hear  the  word.  We  need  to  STOP  using  the  word  “cure”  un<l  we  are  much  closer  to  the  public  defini<on.   7  
    • So,  I  thought  I  would  extend  my  series  into  the  differences  in  terminology  between  biology  and  physics,  with  the  intent  to  help  build  beber  understanding  of  why  this  is  so  important.    BTW,  the  biology  meanings  are  the  first  line  under  each  word,  and  the  physicist  meanings  are  at  the  bobom  in  case  it  wasn’t  clear.  ;-­‐)   8  
    • 9  
    • 10  
    • Here  is  a  first  abempt  to  further  define  and  correlate  the  processes  that  biology  and  physics  use.    NOTE:  THESE  MAY  NOT  BE  ACCURATE!!!!    I  would  like  to  work  with  some  of  you  to  actually  develop  this  as  a  tool  that  might  help  PS-­‐OCs  communicate  more  effec<vely  together,  and  to  the  external  communi<es  that  need  to  be  involved.   11  
    • There  seems  to  be  a  major  emphasis  in  the  NCI  PS-­‐OC  program  on  ‘new  ideas’,  but  aeer  hearing  4  days  of  intense  and  wonderful  discussions,  I  think  it  would  be  beber  to  focus  on  how  to  CONNECT  ideas  that  have  already  been  published  out  there  somewhere  together  in  new  ways  so  we  can  actually  MOVE  the  BALL  forward  toward  results  for  people.    It  is  also  clear  that  the  physics  world  may  not  understand  just  how  different  specific  types  of  cancers  are  in  rela<on  to  each  other.    While  we  hear  that  cancers  have  common  pathways,  the  way  tumors  work  and  interact  with  their  environment  can  be  very  different  in  various  parts  of  the  body.  In  other  words,  we  can’t  just  take  an  observa<on  or  experiment  from  one  kind  of  cancer  and  automa<cally  assume  that  it  works  that  way  in  every  kind  of  cancer.    I  was  also  shaken  a  bit  by  the  terminology  used  to  describe  leeover  cells  in  the  body  that  might  develop/have  resistance  to  exis<ng  cancer  therapies  (regarding  Mul<-­‐Drug  Resistance  known  as  MDR).    We  need  to  come  up  with  a  beber  term  than  ‘survivor’  cells  quickly  before  this  becomes  yet  one  more  unfortunate  misnomer.   12  
    • Just  some  points  that  need  to  be  said  out  loud  so  we  don’t  have  to  live  with  the  consequences  of  hidden  assump<ons!   13  
    • These  were  some  ideas  that  can  up  during  the  4  day  discussions  that  seemed   important  to  follow  up.     14  
    • This  is  how  I  see  the  value  of  the  Princeton  PS-­‐OC.   15  
    • These  were  ideas  that  came  to  mind  that  the  Princeton  PS-­‐OC  could  pursue.   16  
    • These  ideas  came  up  from  the  4  days  of  discussion  (including  the  Interna<onal  Workshop)  that  need  to  be  pursued  by  the  larger  community  of  physicists  and  oncology  scien<sts/clinicians.    I’m  par<cularly  interested  in  what  you  think  about  these  ideas,  and  how  we  might  start  to  develop  them.  #1  seems  like  a  no-­‐brainer,  frankly.  And  #2  is  completely  doable  with  those  of  us  who  have  direct  pa<ent  community  network  capabili<es.   17  
    • Since  so  much  money  is  being  spent  on  the  NCI  TCGA,  it’s  <me  for  the  PS-­‐OC  network  to  ask  for  the  addi<onal  data  they  need  to  do  something  with  it.  Frankly,  this  seems  like  the  only  way  the  huge  sums  spent  on  TCGA  will  get  us  anywhere!   18  
    • Thanks  for  your  interest.    Please  send  comments  to  me  at  Deborah@tumor<me.com    -­‐  Or  -­‐      post  them  at  the  LinkedIn  NCI  Office  of  Physical  Sciences  –  Oncology  group  at  hbp://www.linkedin.com/groups?home=&gid=4536998&trk=anet_ug_hm.   19