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

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

west@CancerGRACE.org

Twitter: @JackWestMD