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Perry Cohen, Ph.D. presents Sham Neurosurgical Procedures in Clinical Trials:  Patient Activists’ Perspectives at the NIH conference
Sham Neurosurgical Procedures in Clinical Trials for Neurodegenerative Diseases: Scientific and Ethical Considerations
held on June 30 and July 1, 2010

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Summary of Patient Activists Views

No one can person speak for all patients, but for 14 years I have advocated for greater PWP participation in policy and design choices and have an established record of being an authentic voice for patient interests. I represent activist PWP who are knowledgeable, informed, and are opinion leaders in online communities. Summary of PWP views:  

Risk benefit tradeoffs are measured against the realty of disease progression.  For advanced PWP the major risk is not having access to more effective treatments (type 2 error)

Time is not neutral for PWP. Advanced patients will take risks to speed the process. Certainty is not required -- full disclosure and honesty are.

Assumptions made about the relationships among variables need to be verified. The interactions between the treatment and the very powerful placebo response to brain surgery are not known.

If placebo responses are reliable, stable, and durable, they should not be treated as bias to be eliminated but rather as an important part of the therapeutic process

Activation of PWP physically and mentally, individually and in groups, at all levels of research and health care is necessary to discover the processes of healing from PD (cure) and is in itself therapeutic.

The major challenge for health care in this century is the creation of the infrastructure to support the paradigm shift to patient-centered health care necessary to manage chronic disease in an era of scientific innovation.  The major challenge for health care in this century is the creation of the infrastructure to support the paradigm shift to patient-centered health care necessary to manage chronic disease in an era of scientific innovation. 

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