dr. jack west oncology 2.0, to wa ag's office
DESCRIPTION
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.TRANSCRIPT
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
Many Patients are Woefully Underserved
Most Oncologists are Too Busy
These Problems Will Only Get Worse
Major Breakthroughs are Hard to Come By
EML4-ALK Translocations in NSCLC
EML4-ALK frequency: ~4% (64/1709)
Primarily adenoCa, minimial or no smoking history
Soda et al., Nature 448: 561-566, 2007
Bang, ASCO 2010 #2 (Plenary)
Pre-Treatment After 2 cycles PF-02341066
48 yo Female Never Smoker with Stage IV NSCLC Positive for EML4-ALK Target
Lung Cancer Mutation Consortium
http://www.golcmc.com
At least 1 mutation was found in 54% (280/516) of tumors completely tested (CI 50%–59%)
CI = confidence interval. Kris et al, 2011.
Lung Cancer Mutation Consortium: Incidence of Single Driver Mutations
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
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.
We All Need to Adapt to Social Media
Is the Internet a Force of Good or Evil for Delivery of Cancer Care*?
(*The answer is YES)
If Good Information isn’t Available, There’s Plenty of BAD Information Online
Internet Also Provides Easy Amplification of Poor Quality Information
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”
Overcoming Increasing Specialization/ Low Geographic Density of Patient Groups
Putting Out Good Information and a Thoughtful Perspective, to Reach Many People
Lay out the evidence, accept or refute in open forum
www.CancerGRACE.org a 501(c)3 nonprofit
Leveraging the Internet to Convey High Quality Information
• Not time-limited
• 25-30K visits/mo • 15-20K absolute
unique visitors/mo
• Not limited by geography
Posts of New, Timely Content
Similar to CME Lectures, but for Lay Public
GRACE Question/Answer Forum
Smart Consumers Can Help Convey High Quality Messages Credibly
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
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
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