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)
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
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.
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
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
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
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
26. CUE: The Journey from Outside In
Lorraine Johnson, JD, MBA
CEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
27. CUE: The Journey from Outside In
Lorraine Johnson, JD, MBA
CEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
28. CUE: The Journey from Outside In
Lorraine Johnson, JD, MBA
CEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
29. CUE: The Journey from Outside In
Lorraine Johnson, JD, MBA
CEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
30. CUE: The Journey from Outside In
Lorraine Johnson, JD, MBA
CEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
31. CUE: The Journey from Outside In
Lorraine Johnson, JD, MBA
CEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
32. CUE: The Journey from Outside In
Lorraine Johnson, JD, MBA
CEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
33. CUE: The Journey from Outside In
Lorraine Johnson, JD, MBA
CEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
34. CUE: The Journey from Outside In
Lorraine Johnson, JD, MBA
CEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
35. CUE: The Journey from Outside In
Lorraine Johnson, JD, MBA
CEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
36. CUE: The Journey from Outside In
Lorraine Johnson, JD, MBA
CEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
37. CUE: The Journey from Outside In
Lorraine Johnson, JD, MBA
CEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
38. CUE: The Journey from Outside In
Lorraine Johnson, JD, MBA
CEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
39. CUE: The Journey from Outside In
Lorraine Johnson, JD, MBA
CEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare