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