1. Taking Research and Development To The Clinic… Are We There Yet?
Paula Kim , TRAC- Translating Research Across Communities
AAAS-FDLI Personalized Medicine: Planning for the Future
Colloquium 1: Diagnostics and Diagnoses: Paths to Personalized Medicine
Washington DC • June 1, 2009

2. The Art of Translation…
“ From the standpoint of medicine as an art for the preparation and cure of disease, the man who translates the hieroglyphics of science into the plain language of healing is certainly more useful.”
-Sir William Osler, Physician

3. Across The Scientific Spectrum
Physical
Behavioral
Social
Cultural
Economic
Political
Spiritual
Technological

4. H PE

5. For Our Road Trip… How Do We Describe Personalized Medicine?
Journey
Destination
Vehicle
Highway
Road Map
Compass

6. Patient Dilemma with Words and Decisions…
Personalized medicine?
Donate tissue?
Biospecimen?
Biopsy? 2nd pass?
Targeted Therapies?
Genomics? Proteomics?
Invasive ? Non-invasive?
Academic Center ? Local ?
Informed Consent?
How to pick treatment?
Do my kids need genetic testing?
Where is my tissue?
Eligible ? Insurance ?
Am I Going to Live?

7. The Promise Personal Targeted Therapies
Seek and Control instead of Search and Destroy
Genetic Testing
Reduced Toxicities
Predictive/Preventive Capability
Reduced drug failure rates
A CURE
Hype or Not?

8. POSITIVE MESSAGE ?
OR MIXED MESSAGE ?
NEGATIVE MESSAGE ?

9. Hide and Seek? Currently… No coordinated system to assist patients
Many patients with difficult to treat disease have poor prognosis, limited options, and a very short timeframe to make decisions; lack access to internet
Patients and caregivers often receive very little direction & guidance for treatment, system navigation and financial options

10. Treatment Decision Making: Outside Sources of Info for Patients
Answer Options
Greatly
influences
Somewhat
Barely
Does not
influence
Not
applicable
Information received from a patient advocacy organization 15 63 19 7 11
Information read in the newspaper or mainstream magazine 5 37 35 27 10
Information heard on the TV or radio 1 20 41
Information retrieved on the internet 60 25 9 8
Source: TRAC Perspectives on Costs of Cancer Care Survey-2006

11. Understanding Choices In Order To Make Decisions: What Patients Want
Source: TRAC Perspectives on Costs of Cancer Care Survey-2006

12. The Law and Spice of Life
“Variability is the law of life, and as no two faces are the same, so no two bodies are alike, and no two individuals react alike and behave alike under the abnormal conditions which we know as disease.”
-Sir William Osler, Physician

13. Hide and Seek… …Olly Olly Oxen Free
Ready or not, personalized medicine is moving… towards becoming the norm and not the exception…How fast we get there…will depend on many factors with perhaps two of the most important ones being the access and use of high quality well annotated biospecimens… and how well or not everyone… behaves along the way.

14. Who is in the Biospecimen Sandbox?
Personalized Medicine
Who is in the Biospecimen Sandbox?
Patients
Caregivers
Public
Organizations
Advocacy
Research and Medical
NCI
FDA
CMS
HRSA
AHRQ
NIH
3rd Party Payers
Industry
P&P Agencies
and Industry
Researchers
Clinical Trial PI
Community MDs
Academic Center MDs and PhDs
Pathologist
Frame: Possibly use in the discussion – Check anyone you give info to, need info from
PKI © 2008 All Rights Reserved

15. Challenges and Questions That Will Arise
Do We Have a National System
Will It Level the Playing Field or Not
Will Access Be More Inclusive or Exclusive
How Does This Affect Me and My Family
Just Because You Build It, Does Not Mean They Will Come

16. Why We Must Get This Right…
“ We must harness the scientific, industrial, and social will to accelerate discoveries into accessible and meaningful clinical applications. Patients, families, friends, and loved one are counting on us…Because in the end, it’s not about you, or me, or the science, it’s about the patient.”
Paula Kim - Research & Patient Advocate

17. Patient & Advocate Perspectives
Don’t Leave Home Without Them