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Dr. Jack West Oncology 2.0, to WA AG's Office


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Dr. H. Jack West, medical oncologist and Founder/CEO of Global Resource for Advancing Cancer Education (GRACE,, spoke to WA state Attorney General's office about the changing landscape of cancer care and how the internet and specifically online patient communities and education will become disruptive in changing the patient/physician dynamic.

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Dr. Jack West Oncology 2.0, to WA AG's Office

  1. 1. Oncology 2.0: Integrating Cancer Patients andCaregivers to Improve Cancer Care Howard (Jack) West, MD Swedish Cancer Institute Seattle, WA Founder & CEO GRACE October 14, 2011
  2. 2. Many Patients are Woefully Underserved
  3. 3. Most Oncologists are Too Busy
  4. 4. These Problems Will Only Get Worse
  5. 5. Major Breakthroughs are Hard to Come By
  6. 6. EML4-ALK Translocations in NSCLCSoda et al., Nature 448: 561-566, 2007 EML4-ALK frequency: ~4% (64/1709) Primarily adenoCa, minimial or no smoking historyBang, ASCO 2010 #2 (Plenary)
  7. 7. 48 yo Female Never Smoker with Stage IV NSCLC Positive for EML4-ALK Target Pre-Treatment After 2 cycles PF-02341066
  8. 8. Lung Cancer Mutation Consortium
  9. 9. Lung Cancer Mutation Consortium:Incidence of Single Driver Mutations At least 1 mutation was found in 54% (280/516) of tumors completely tested (CI 50%–59%) CI = confidence interval. Kris et al, 2011.
  10. 10. Misalignment of GoalsOncologists are not always incentivized to give what is best for patients •  Time to learn best Rx •  Time, effort to give best Rx •  Financial rewards greater for alternative Rx
  11. 11. BOTTOM LINE(S) 1) We could do much better vs.cancer today if people received thebest treatments available now. 2) Nobody is better incentivized tolearn best treatment than the patient.
  12. 12. We All Need toAdapt to Social Media
  13. 13. Is the Internet a Force of Goodor Evil for Delivery of Cancer Care*? (*The answer is YES)
  14. 14. If Good Information isn’t Available,There’s Plenty of BAD Information Online
  15. 15. Internet Also Provides Easy Amplification of Poor Quality Information
  16. 16. The Internet Makes it Easy to Propogate Poor Quality Information•  Case studies of unusually good or bad outcomes•  Fears about clinical research•  Conspiracy theories about cure for cancer “Don’t let your doctor tell you NO”
  17. 17. Overcoming Increasing Specialization/Low Geographic Density of Patient Groups
  18. 18. Putting Out Good Information and aThoughtful Perspective, to Reach Many PeopleLay out the evidence, accept or refute in open forum
  19. 19. www.CancerGRACE.orga 501(c)3 nonprofit
  20. 20. Leveraging the Internet to Convey High Quality Information•  Not time-limited •  Not limited by geography •  25-30K visits/mo •  15-20K absolute unique visitors/mo
  21. 21. Posts of New, Timely Content
  22. 22. Similar to CME Lectures, but for Lay Public
  23. 23. GRACE Question/Answer Forum
  24. 24. Smart Consumers Can Help Convey High Quality Messages Credibly
  25. 25. Dr. George Demetri, Medical Director of Center for Sarcoma & Bone Oncology, DFCIThe new research model pioneered by the Life Raft Group is making it possible for patients and family members to contribute to clinical research for their diseases in unprecedented ways. - Dr. George Demetri, DFCI
  26. 26. Patients Can Aggregate to RevealUnknown/Underappreciated Adverse Effects•  Tips for managing EGFR inhibitor toxicities•  Runny nose with erlotinib•  Muscle aches with bevacizumab•  Swelling/irritation around eyes with pemetrexed•  ?Serious but rare adverse effects
  27. 27. Final Thoughts•  Medicine, especially cancer, is becoming more complex, requiring more expertise•  The genie isn’t going back into the bottle•  Integration of patients/caregivers into their care will be disruptive, potentially good or bad, depending on quality of information available•  Telemedicine is likely to fill this space as a means of providing specialized care across a broader geography
  28. 28. west@CancerGRACE.orga 501(c)3 nonprofit Twitter: @JackWestMD