Dr. H. Jack West, medical oncologist and Founder/CEO of Global Resource for Advancing Cancer Education (GRACE, www.CancerGRACE.org), 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.

1. Oncology 2.0:
Integrating Cancer Patients and
Caregivers to Improve Cancer Care
Howard (Jack) West, MD
Swedish Cancer Institute
Seattle, WA
Founder & CEO
GRACE
October 14, 2011

4. Many Patients are Woefully Underserved

5. Most Oncologists are Too Busy

6. These Problems Will Only Get Worse

7. Major Breakthroughs are Hard to Come By

8. EML4-ALK Translocations in NSCLC
Soda et al., Nature 448: 561-566, 2007
EML4-ALK frequency:
~4% (64/1709)
Primarily adenoCa, minimial
or no smoking history
Bang, ASCO 2010
#2 (Plenary)

9. 48 yo Female Never Smoker with Stage IV NSCLC
Positive for EML4-ALK Target
Pre-Treatment After 2 cycles PF-02341066

10. Lung Cancer Mutation Consortium
http://www.golcmc.com

11. 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.

13. Misalignment of Goals
Oncologists 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

14. BOTTOM LINE(S)
1) We could do much better vs.
cancer today if people received the
best treatments available now.
2) Nobody is better incentivized to
learn best treatment than the patient.

17. We All Need to
Adapt to Social Media

18. Is the Internet a Force of Good
or Evil for Delivery of Cancer Care*?
(*The answer is YES)

19. If Good Information isn’t Available,
There’s Plenty of BAD Information Online

20. Internet Also Provides Easy Amplification of
Poor Quality Information

21. 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”

22. Overcoming Increasing Specialization/
Low Geographic Density of Patient Groups

23. Putting Out Good Information and a
Thoughtful Perspective, to Reach Many People
Lay out the evidence, accept or refute in open forum

24. www.CancerGRACE.org
a 501(c)3 nonprofit

25. 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

26. Posts of New, Timely Content

27. Similar to CME Lectures, but for Lay Public

28. GRACE Question/Answer Forum

29. Smart Consumers Can Help Convey
High Quality Messages Credibly

31. Dr. George Demetri, Medical Director of Center
for Sarcoma & Bone Oncology, DFCI
The 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

32. Patients Can Aggregate to Reveal
Unknown/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

34. 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

35. www.CancerGRACE.org
west@CancerGRACE.org
a 501(c)3 nonprofit
Twitter: @JackWestMD