johnson, lorraine cue 6.4.12 final final
TRANSCRIPT
CUE: The Journey from Outside In
Lorraine Johnson, JD, MBACEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
Does Like Attract Like?
TRANSFORMATION
Individual
Organizational
Societal
“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)
It’s All About the Science, Right?
Evidence alone is never enough
Evidence is never enough
—it is always evidence in the context of values and preferences that influence guidelines and clinical care.
Dr. Gordon Guyatt
• How good is the body of evidence?
• What about – evidence gaps?– evidence quality?– scientific uncertainty?– Close calls and trade-
offs?• Whose values count—
when?• 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
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Values and perspectives matter
"The Origin and Meaning of Miles' Law," Public Administration Review, September – October 1978.
Miles Law: Keeping your perspective on values
Where you stand depends on where you sit.
Journey from without to within
CUE: Funding sources preserve perspective
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
Cue Organizations: Does like attract like?
Or are we different?
Broad consumer groups
Disease specific groups
Demographic groups
Patients, consumers, caretakers
Context and perspective shape patient voice
• Patient safety• Pharmaceutical industry influence • Access to care issues• Over-reliance on medical solutions• Informed choice
Where you stand depends on where you sit.
"The Origin and Meaning of Miles' Law," Public Administration Review, September – October 1978.
Where you stand depends on where you sit.
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
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
Partnership requires parity
Patient voice: individual or prepared representative?
Individual patient voice•represents their own interests•may be easily intimidated by experts•may defer to authority •may self censor•may be easily discounted by decision makers•can lead to tokenism
Prepared consumer advocate •represents larger issues of collective group•is empowered to speak on their behalf •has strong voice •can serve as a bridge between individual patients and researchers•can lead to true partnership
Patient voice should not be easily dismissed
"The Origin and Meaning of Miles' Law," Public Administration Review, September – October 1978.
Where you stand depends on where you sit.
Content Travels--Change happens
•Individual Perspective•Organizational Perspective• Within CUE• Within non-profit• Within alliances
•Societal Perspective
Misaligned Incentives
Illustration Leo Jung from Carlot, D., Dr. Drug Rep. The New York Times. November 25, 2007
We have a long way to go
Is it business as usual or do we “have the chance to turn the world upside down just a bit?”
Dr. Harlan Krumholz, PCORI
Does Like Attract Like?
Culture does not change because we desire to change it.
Culture changes when the organization[s] [are] transformed;
[C]ulture reflects the realities of people working together every day.
Frances Hesselbein
The Key to Cultural Transformation, Leader to Leader (Spring 1999)
CUE: The Journey from Outside In
Lorraine Johnson, JD, MBACEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
CUE: The Journey from Outside In
Lorraine Johnson, JD, MBACEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
CUE: The Journey from Outside In
Lorraine Johnson, JD, MBACEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
CUE: The Journey from Outside In
Lorraine Johnson, JD, MBACEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
CUE: The Journey from Outside In
Lorraine Johnson, JD, MBACEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
CUE: The Journey from Outside In
Lorraine Johnson, JD, MBACEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
CUE: The Journey from Outside In
Lorraine Johnson, JD, MBACEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
CUE: The Journey from Outside In
Lorraine Johnson, JD, MBACEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
CUE: The Journey from Outside In
Lorraine Johnson, JD, MBACEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
CUE: The Journey from Outside In
Lorraine Johnson, JD, MBACEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
CUE: The Journey from Outside In
Lorraine Johnson, JD, MBACEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
CUE: The Journey from Outside In
Lorraine Johnson, JD, MBACEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
CUE: The Journey from Outside In
Lorraine Johnson, JD, MBACEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
CUE: The Journey from Outside In
Lorraine Johnson, JD, MBACEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare
CUE: The Journey from Outside In
Lorraine Johnson, JD, MBACEO LymeDisease.org
Steering Committee, Consumers United for Evidence-Based Healthcare