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Date: | Wed, 24 Oct 2007 23:50:13 -0400 |
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*_Note:_ * Registration and Information:
http://ovariancancerdebate.blogspot.com/
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October 23, 2007
Letter to the Editor (Canada):
Studies, opinions, conferences and much wringing of hands have discussed
for years how to bring the patients' voices into cancer care. Research
papers continue to tell us that there is a significant difference
between what patients feel is crucial but yet often fails to translate
into actual care, all for a variety of reasons. Today, the Consumer
Advocare Network of Canada voiced similar concerns. Is this a
criticism? Well, yes and no. There has to be a way to move forward and
not take decades to do so.
Yet, we still are not receptive to having honest and frank discussions
about the issues which we, as survivours, face. In these efforts, as
ovarian cancer patients and as a community, we have organized two
patient-led conferences, one in the U.S. and one in Toronto. The
proactive decision to bring these discussions into the open and to the
public was quoted recently and very succinctly by Dr. Hsien-Hsien Lei:
"How times have changed. Cancer has come from being taboo to being a
subject of debate. Even better, ever more cancer survivors are now
leading the charge for better healthcare.".
These conferences are a debate-style format and they will speak to the
patients' views and analysis of the past decade in ovarian cancer. Areas
of discussion include access to care, genetics and survival. Very tough
but important talks.
A new and exciting opportunity presents itself through these patient-led
conferences. In ovarian cancer our
heroes are the women and family caregivers. So, as a community we are
and will continue to profile the ovarian cancer community as a
'community of heroes'. The intended purpose is to encourage real
discussion and yes, debate. We are stepping outside of the comfort box.
These conferences have been paid for by the survivours themselves and at
no cost to any participant. We encourage everyone to participate because
it is about you! For further information visit:
http://ovariancancerdebate.blogspot.com/
Sandi Pniauskas
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