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Paula Kim, TRAC- Translating Research Across Communities AAAS-FDLI Personalized Medicine: Planning for the Future Colloquium 1: Diagnostics and Diagnoses:

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Presentation on theme: "Paula Kim, TRAC- Translating Research Across Communities AAAS-FDLI Personalized Medicine: Planning for the Future Colloquium 1: Diagnostics and Diagnoses:"— Presentation transcript:

1 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 Taking Research and Development To The Clinic… Are We There Yet?

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. 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 -Sir William Osler, Physician

3 PhysicalBehavioralSocialCulturalEconomicPoliticalSpiritualTechnological Across The Scientific Spectrum

4 H PE

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

6 Personalized medicine? Donate tissue? Biospecimen? Biopsy? 2 nd 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? Patient Dilemma with Words and Decisions…

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

8 POSITIVE MESSAGE ? NEGATIVE MESSAGE ? OR MIXED MESSAGE ?

9 Currently… No coordinated system to assist patients 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 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 Patients and caregivers often receive very little direction & guidance for treatment, system navigation and financial options Hide and Seek?

10 Treatment Decision Making: Outside Sources of Info for Patients Source: TRAC Perspectives on Costs of Cancer Care Survey-2006 Answer Options GreatlyinfluencesSomewhatinfluencesBarelyinfluences Does not influenceNotapplicable Information received from a patient advocacy organization Information read in the newspaper or mainstream magazine Information heard on the TV or radio Information retrieved on the internet

11 Understanding Choices In Order To Make Decisions: What Patients Want 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. 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 -Sir William Osler, Physician

13 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. Hide and Seek… …Olly Olly Oxen Free

14 Who is in the Biospecimen Sandbox? Patients Patients Caregivers Caregivers Public Public Organizations Organizations Advocacy Researchers Researchers Clinical Trial PI Clinical Trial PI Community MDs Community MDs Academic Center MDs and PhDs Academic Center MDs and PhDs Pathologist Pathologist Research and Medical NCI NCI FDA FDA CMS CMS HRSA HRSA AHRQ AHRQ NIH NIH 3 rd Party Payers 3 rd Party Payers Industry Industry P&P Agencies and Industry P&P Agencies and Industry PKI © 2008 All Rights Reserved Personalized Medicine

15 Challenges and Questions That Will Arise Do We Have a National SystemDo We Have a National System Will It Level the Playing Field or NotWill It Level the Playing Field or Not Will Access Be More Inclusive or ExclusiveWill Access Be More Inclusive or Exclusive How Does This Affect Me and My FamilyHow Does This Affect Me and My Family Just Because You Build It, Does Not Mean They Will ComeJust 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, its not about you, or me, or the science, its about the patient. 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, its not about you, or me, or the science, its about the patient. Paula Kim - Research & Patient Advocate Paula Kim - Research & Patient Advocate

17 Patient & Advocate Perspectives Dont Leave Home Without Them


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