Opportuni)es	
  for	
  Posi)vely	
  Impac)ng	
  
Cancer	
  Care	
  –	
  an	
  informa)cs	
  perspec)ve	
  

Warren	
  A.	
...
Three	
  policy	
  issues	
  
•  Informed	
  Consent	
  –	
  what	
  should	
  it	
  
enable?	
  Does	
  it?	
  
•  Iden)fi...
Outline	
  
Disrup)ve	
  technologies	
  	
  
GeQng	
  social	
  
What	
  is	
  big	
  data?	
  
Open	
  access	
  to	
  d...
Disrup2ve	
  Technologies	
  
•  Printing

Access	
  to	
  knowledge	
  –	
  democra)za)on	
  of	
  learning	
  
Disrup2ve	
  Technologies	
  
•  Printing
•  Steam power

Move	
  from	
  human	
  power	
  or	
  animal	
  power	
  
to	
...
Disrup2ve	
  Technologies	
  
•  Printing
•  Steam power
•  Transportation

Easy	
  distribu)on	
  of	
  goods	
  
Disrup2ve	
  Technologies	
  
• 
• 
• 
• 

Printing
Steam power
Transportation
Electricity

Easy	
  distribu)on	
  of	
  e...
Disrup2ve	
  Technologies	
  
• 
• 
• 
• 
• 

Printing
Steam power
Transportation
Electricity
Antibiotics

Reduced	
  the	...
Disrup2ve	
  Technologies	
  
• 
• 
• 
• 
• 
• 

Printing
Steam power
Transportation
Electricity
Antibiotics
Semiconductor...
Disrup2ve	
  Technologies	
  
• 
• 
• 
• 
• 
• 
• 

Printing
Steam power
Transportation
Electricity
Antibiotics
Semiconduc...
Disrup2ve	
  Technologies	
  
• 
• 
• 
• 
• 
• 
• 
• 

Printing
Steam power
Transportation
Electricity
Antibiotics
Semicon...
Disrup2ve	
  Technologies	
  
•  Printing
•  Steam power
•  Transportation
•  Electricity
•  Antibiotics
6.6B	
  ac2ve	
  ...
GeIng	
  Social	
  
•  Measuring behavior across a population
•  Understanding behavior – can we provide better
risk estim...
Big	
  Data	
  
•  To	
  me,	
  Big	
  Data	
  is	
  about	
  emergent	
  proper)es	
  	
  
•  Big	
  Data	
  with	
  soci...
The	
  future	
  
•  Elastic computing ‘clouds’
•  Social networks
•  Big Data analytics
•  Precision medicine
•  Measurin...
Open	
  Data	
  Access	
  
•  We	
  need	
  to	
  provide	
  data	
  access	
  to	
  people	
  
outside	
  of	
  biomedici...
Precision	
  Oncology	
  
•  The	
  era	
  of	
  precision	
  medicine	
  and	
  precision	
  oncology	
  
is	
  predicate...
Consent	
  
•  In	
  a	
  learning	
  healthcare	
  system,	
  we	
  ‘learn’	
  
from	
  every	
  pa)ent	
  who	
  comes	
...
Iden2fying	
  informa2on	
  
•  Equa)ng	
  genomic	
  data	
  with	
  a	
  fingerprint	
  is	
  
appropriate	
  
•  Privacy...
Data	
  access	
  
•  How	
  do	
  we	
  lower	
  the	
  barriers	
  for	
  accessing	
  research	
  
data,	
  including	
...
Thank	
  You!	
  
•  Ques)ons?	
  
Warren	
  A.	
  Kibbe	
  
warren.kibbe@nih.gov	
  
Ques2ons	
  
•  Are	
  there	
  beHer	
  models	
  for	
  standardized	
  consent?	
  
Are	
  there	
  ways	
  to	
  reima...
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National Cancer Policy Forum Summit - Warren Kibbe Keynote November 2013

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Discussion of national policy issues relevant for cancer research. Consent, data access, privacy.

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National Cancer Policy Forum Summit - Warren Kibbe Keynote November 2013

  1. 1. Opportuni)es  for  Posi)vely  Impac)ng   Cancer  Care  –  an  informa)cs  perspec)ve   Warren  A.  Kibbe,  PhD    warren.kibbe@nih.gov   Center  for  Biomedical  Informa)cs  and  Informa)on  Technology   Na)onal  Cancer  Ins)tute     hHp://wiki.bioinforma)cs.northwestern.edu/index.php/Warren_Kibbe    
  2. 2. Three  policy  issues   •  Informed  Consent  –  what  should  it   enable?  Does  it?   •  Iden)fica)on  of  specimens  and   data.  What  is  privacy?  How  do  we   share  appropriately?  Is  that  a   consent  issue?   •  Open  access  to  data  –  how  can  we   respect  the  desire  of  pa)ents  to   share  their  specimens  and  data  to   make  truly  transforma)ve  inference   and  observa)ons?  
  3. 3. Outline   Disrup)ve  technologies     GeQng  social   What  is  big  data?   Open  access  to  data  
  4. 4. Disrup2ve  Technologies   •  Printing Access  to  knowledge  –  democra)za)on  of  learning  
  5. 5. Disrup2ve  Technologies   •  Printing •  Steam power Move  from  human  power  or  animal  power   to  hundreds  of  horsepower  per  person    
  6. 6. Disrup2ve  Technologies   •  Printing •  Steam power •  Transportation Easy  distribu)on  of  goods  
  7. 7. Disrup2ve  Technologies   •  •  •  •  Printing Steam power Transportation Electricity Easy  distribu)on  of  energy  
  8. 8. Disrup2ve  Technologies   •  •  •  •  •  Printing Steam power Transportation Electricity Antibiotics Reduced  the  impact  of  secondary   infec)ons.  Huge  change  in  life   expectancy  
  9. 9. Disrup2ve  Technologies   •  •  •  •  •  •  Printing Steam power Transportation Electricity Antibiotics Semiconductors &VLSI design Digital  Compu)ng   Density  of  devices  
  10. 10. Disrup2ve  Technologies   •  •  •  •  •  •  •  Printing Steam power Transportation Electricity Antibiotics Semiconductors &VLSI design http Hyperlinking!  
  11. 11. Disrup2ve  Technologies   •  •  •  •  •  •  •  •  Printing Steam power Transportation Electricity Antibiotics Semiconductors &VLSI design http High throughput biology Systems  view    -­‐  end  of  reduc)onism?    
  12. 12. Disrup2ve  Technologies   •  Printing •  Steam power •  Transportation •  Electricity •  Antibiotics 6.6B  ac2ve  mobile  contracts   1.9B  smart  phone  contracts   •  Semiconductors &VLSI design 1.1B  land  lines   US:   •  http 345M  ac2ve  mobile  contracts   287M  smart  phone  contracts   •  High throughput biology Everyone  is  a  data  provider   •  Ubiquitous computing Data  immersion  
  13. 13. GeIng  Social   •  Measuring behavior across a population •  Understanding behavior – can we provide better risk estimates for individuals? •  Social media is a big data opportunity – what are the ethics of big data? •  Synergize with the energy and immediacy of patient advocates •  Patients want more data sharing – how can we facilitate that appropriately? This  changes  trial  design  –  sta)s)cs  un)l  now  has  been  focused  on  how  to   design  an  appropriate  sample  so  that  the  sample  can  be  generalized  to  the   popula)on  –  what  happens  when  we  measure  the  ENTIRE  popula)on  ??  
  14. 14. Big  Data   •  To  me,  Big  Data  is  about  emergent  proper)es     •  Big  Data  with  social  media  changes  the  sta)s)cal   paradigm  –  rather  than  modeling  if  a  given  sample  is   representa)ve  of  the  popula)on,  you  have  all  the   data  from  the  popula)on!!   •  To  accelerate  solving  real  problems  in  cancer  we   must  combine  systems  biology,  social  data  (behavior   and  exposure)  with  clinical  care  and  outcomes  from   healthcare  providers  
  15. 15. The  future   •  Elastic computing ‘clouds’ •  Social networks •  Big Data analytics •  Precision medicine •  Measuring health •  Practicing protective medicine Seman)c  and   synop)c  data   Intervening   before  health  is   compromised   Learning systems that enable learning from every cancer patient
  16. 16. Open  Data  Access   •  We  need  to  provide  data  access  to  people   outside  of  biomedicine  who  have  the  skills   and  training  to  mine  and  analyze  data     •  More  access  will  mean  more  innova2on  
  17. 17. Precision  Oncology   •  The  era  of  precision  medicine  and  precision  oncology   is  predicated  on  the  integra)on  of  research,  care,   and  molecular  medicine  and  the  availability  of  data   for  modeling,  risk  analysis,  and  op)mal  care   How  do  we  re-­‐engineer   transla8onal  research  policies   that  will  enable  a  true  learning   healthcare  system?  
  18. 18. Consent   •  In  a  learning  healthcare  system,  we  ‘learn’   from  every  pa)ent  who  comes  in  for   treatment.  What  is  consent  in  this  model?   What  is  research?   •  What  role  is  there  for  standardized  consent?   •  Are  there  ways  to  reimagine  transla)onal   research  without  consent?  Would  that  help   us?  
  19. 19. Iden2fying  informa2on   •  Equa)ng  genomic  data  with  a  fingerprint  is   appropriate   •  Privacy  needs  to  be  respected   •  If  a  pa)ent  consents  to  release  genomic  data,   how  can  we  lower  the  barriers  to  accessing   and  analyzing  their  data  and  genomes?  
  20. 20. Data  access   •  How  do  we  lower  the  barriers  for  accessing  research   data,  including  molecular  informa)on?   •  Much  clinical  data  belongs  to  the  pa)ent,  but   pa)ents  should  have  the  right  to  provide  data  and   specimens  for  the  public  good.  How  can  we  honor   that  request?  Is  this  a  way  to  promote  appropriate,   low  barrier  data  access?  If  we  can  provide  pa)ents   with  the  ability  to  change  their  level  of  approval  over   )me,  how  does  that  impact  consent?  
  21. 21. Thank  You!   •  Ques)ons?   Warren  A.  Kibbe   warren.kibbe@nih.gov  
  22. 22. Ques2ons   •  Are  there  beHer  models  for  standardized  consent?   Are  there  ways  to  reimagine  transla)onal  research   without  consent   •  If  pa)ents  consent  to  release  genomic  data,  how  can   we  lower  the  barriers  to  accessing  and  analyzing   their  data  and  genomes?  These  data  are  inherently   iden)fying.   •  How  do  we  lower  the  barriers  for  accessing  research   data?  Access  to  individual-­‐level  data  is  cri)cal  for   precision  medicine,  but  is  mired  in  regula)ons  even   with  appropriate  consents  are  in  place.  

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