Johnson, lorraine cue 6.4.12 final final

1. CUE: The Journey from Outside In Lorraine Johnson, JD, MBA

2. T R Individual A N S F Organizational O Does Like Attract R Like? M A T Societal I O N

3. “Evidence-based medicine is the integration of best research evidence with clinical expertise and patient values.” David Sackett Sackett D et al. Evidence-Based Medicine: How to Practice and Teach EBM (2000)

4. It’s All About the Science, Right?

5. Evidence alone is never enough • How good is the body of evidence? • What about Evidence is never enough – evidence gaps? —it is always evidence in – evidence quality? the context of values and – scientific uncertainty? preferences that influence – Close calls and trade- guidelines and clinical offs? care. • Whose values count— when? Dr. Gordon Guyatt • What do we default to when evidence is weak or uncertain? EBM debate Guyatt, G. and Montori, V. (March 21, 2011) available at http://www.youtube.com/watch?v=KjLD5AkD0Ws

6. Values and perspectives matter 6

7. Miles Law: Keeping your perspective on values Where you stand depends on where you sit. "The Origin and Meaning of Miles' Law," Public Administration Review, September – October 1978.

8. Journey from without to within

9. CUE: Funding sources preserve perspective

10. CUE: Learning community Dr. Dickerson and Musa Mayer: Understanding Evidence-based Healthcare: A Foundation for Action Dr. Richard Rosenfeld: Consumer Involvement in Guideline Development. 2011 Annual Meeting 2010 Summit Facebook

11. Cue Organizations: Does like attract like?

12. Or are we different? Broad consumer groups Disease specific groups Demographic groups Patients, consumers, caretakers

13. Context and perspective shape patient voice Where you stand depends on where you sit. • Patient safety • Pharmaceutical industry influence • Access to care issues • Over-reliance on medical solutions • Informed choice

14. Where you stand depends on where you sit. "The Origin and Meaning of Miles' Law," Public Administration Review, September – October 1978.

15. Differences matter It is hardly possible to overrate the value...of placing human beings in contact with persons dissimilar to themselves, and with modes of thought and action unlike those with which they are familiar... Such communication has always been, and is peculiarly in the present age, one of the primary sources of progress. John Stuart Mill

16. The Ties the Bind • Organizations cannot be dominated by industry funding • Organizations must be committed to evidence based principles • Patients need to be empowered and educated to be effective partners in healthcare problem solving

17. Partnership requires parity

18. Patient voice: individual or prepared representative? Individual patient voice Prepared consumer advocate •represents their own interests •represents larger issues of •may be easily intimidated by collective group experts •is empowered to speak on their •may defer to authority behalf •may self censor •has strong voice •may be easily discounted by •can serve as a bridge between decision makers individual patients and •can lead to tokenism researchers •can lead to true partnership

19. Patient voice should not be easily dismissed

20. Where you stand depends on where you sit. "The Origin and Meaning of Miles' Law," Public Administration Review, September – October 1978.

21. Content Travels--Change happens •Individual Perspective •Organizational Perspective • Within CUE • Within non-profit • Within alliances •Societal Perspective

22. Misaligned Incentives We have a long way to go Illustration Leo Jung from Carlot, D., Dr. Drug Rep. The New York Times. November 25, 2007

23. Is it business as usual or do we “have the chance to turn the world upside down just a bit?” Dr. Harlan Krumholz, PCORI

24. Culture does not change because we desire to change it. Culture changes when the organization[s] [are] transformed; Does Like Attract Like? [C]ulture reflects the realities of people working together every day. Frances Hesselbein The Key to Cultural Transformation, Leader to Leader (Spring 1999)

25. CUE: The Journey from Outside In Lorraine Johnson, JD, MBA CEO LymeDisease.org Steering Committee, Consumers United for Evidence-Based Healthcare

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