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Numbers and Risk: A Patient’s Perspective By Geoffrey Hill Thelifewelllived.net Who Am I? • • • • Parent of Three Special Needs Children Project Manager for the Census Bureau Multiple Sclerosis Patient taking Tysabri Self Confessed Geek Disclosure of ABIM Service: Geoffrey Hill, MA I am a current member of the Internal Medicine Board. To protect the integrity of certification, ABIM enforces strict confidentiality and ownership of exam content. As a current member of the Internal Medicine Board, I agree to keep exam information confidential. As is true for any ABIM candidate who has taken an exam for certification, I have signed the Pledge of Honesty in which I have agreed to keep ABIM exam content confidential. No exam questions will be disclosed in my presentation. Numbers • How do we decide what treatment to pursue? • Doctor’s recommendation • Friend’s & family experience • Play the odds Understanding Numbers: A Brief Exercise What is the midpoint between 1 and 9? - Most people I asked at my work said 4.5 but should have said 5. - People from cultures where they are not taught to count mostly say 3. Why? Logarithms • Initially we do not count sequentially. • Difference between 1 and 2 is not the same as difference between 9 and 8. • Perception of difference is based on logarithms. We Do Not Understand Big Numbers • The further we get from 10 or 100, the less we understand. • How big is the United States’ GDP? 16.4 trillion dollars or 17.4 trillion dollars or 17,400 billion dollars? • When we talk about taking in 10k Syrian refugees how big an impact on the problem will our huge sacrifice have on the problem? How To Fake It • Use percent change. • Compare one large number to another one. • This is how I justified the risk of Tysabri when I compared the mortality rate on Tysabri to Chemo. What Measures and What Matters • “Negative Outcomes” • Is the meaning the same for patients and doctors? • Are all negative outcomes equal? • Relative Risks • What are the risks for the alternatives? • Not all risks are negative. • Tracking Risks and Outcomes • My titer count blood tests give information on risk level. • Timing of predictive numbers lags my experience. What Measure? • How do we measure success or failure? • Symptoms, change in symptoms, death? Complex Systems Theory • Difference between Complicated Systems and Complex Systems • Properties of a Complex System Who Decides? Who Should? • FDA • Doctors • Insurance • Patients decide only when empowered by the systems to which they belong. Contact Information • Geoffrey Hill • Email: [email protected] • Web Page: Thelifewelllived.net