Sandi Pniauskas

Monday, 15 September 2008

September 15th, 2008: CANO conference presentation - Survivors' Debate: The Past Decade in Ovarian Cancer

Novel Prescriptives : presentation/abstract -

Survivors Debate: The Past Decade in Ovarian Cancer

Pamela J. West, RN(EC), NP-Adult, MSc, CON(C),
CHPCN(C)1, Sandi Pniauskas2, Carolyn Benivegna3 (*3 editors note: passed away from ovarian cancer Sept 2008).
1Rouge Valley Health System, Toronto, ON, Canada, 2No Institution
- patient, Whitby, ON, Canada, 3No Institution - patient,
Novi,, MI, USA.

Two fascinating and novel cancer survivor-led conferences
point the way to the future. As healthcare providers,
we may have missed an exceptional opportunity.
We need to get ‘on board’ and truly ‘walk-the-walk’
rather than merely espousing a concept of innovation

In the U.S. and Canada during 2007, four ovarian cancer survivors
coordinated and self-funded the first ever cancer debates.
Oncology nursing professionals were asked to participate
in supportive roles and to document the debate
proceedings. The debates were planned, co-ordinated and
delivered by ovarian cancer survivors who took them on the
road, presenting both in Michigan and Ontario.

Research data from the past decade were presented from a pro and
con perspective and included awareness and communication; early detection;
survival; access to care and genetics.

Marketing the programs garnered significant controversy,
but successful results were proof positive that the vision of
these cancer patient survivors was brought to fruition.

In preparation for the debates, the survivors conducted a survey,
in part to high-light the value patients place on relationships
with their physicians.

If, as healthcare providers we
feared criticism or exclusion, there was little cause for concern.

This presentation features the results of the e-survey (n = 303),
the essence of the debates (including video footage) and evaluations
of the process. Health care professionals were impressed
by the patients’ knowledge, expertise and wonderful ability to
‘relay the message.’ Survivors were anxious to learn more about
the role of advocacy and information sharing.