Survivors' Debate: The Past Decade in Ovarian Cancer on Yahoo! Video

Survivors' Debate: The Past Decade in Ovarian Cancer on Yahoo! Video

Google Video: Survivors' Debate: The Past Decade in Ovarian Cancer

Excerpts from 2007 Debate conference via edited google video
http://video.google.com/videoplay?docid=-9028885979921555185

2008 Survivors' Debate CANO presentation

click on title above or cut and paste the link below for the Pdf file: 2008 CANO presentation Survivors' Debate: The Past Decade in Ovarian Cancer

http://groups.google.com/group/survivors-debate/files?&sort=rdate

Carolyn Benivegna - passed away from ovarian cancer September 25th, 2008

Information for Services:

Saturday, October 4, 2008
11:00 AM
Eulogy & Mass
Holy Family Church
24505 Meadowbrook Road
(Between 10 Mile and Grand River)
Novi, MI 48375
(248) 349-8847

Saturday, October 4, 2008
1:00 PM/Immediately following Eulogy & Mass
Wake
Fox Run
Fireside Restaurant, Ascot Clubhouse
Follow the "Memorial Service Parking" signs. Park and take provided Fox Run
Shuttle.
41100 Fox Run Road
Novi, MI 48377
(248) 668-8600

Tax-deductible contribution in lieu of flowers:

Please make checks payable to
University of Michigan and note on the check

"Carolyn & Paul Benivegna Ovarian Cancer
Research Fund"

Mail contributions to Office of Development, UM
Comprehensive Cancer Center, 301 East Liberty, Suite 130, Ann Arbor MI
48105-2251.

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.

Survivors' Debate: Ovarian Cancer

Definition: Debate - discuss the pros and the cons of an issue

~~~~~~~~~~~

To HOST a Survivors' Debate Program whether a survivor, family member, caregiver or healthcare professional contact:

Sandi Pniauskas
sandipn@sympatico.ca

__________________________________________________________________

November 23rd, 2007:

Survivors' Debate: Ovarian Cancer - Mission Statement, Roles and Responsibilities document now online (see sidebar)
__________________________________________________________________

NEWS FLASH

Participants' Survey Responses (general): the highest rated sections of the program were the Pro/Con style debate format and the Question and Answer period.

NOVI PARTICIPANT COMMENTS:

- The whole thing was KICK ASS! (observation from healthcare professional)
- Very good program – do it again
- I really enjoyed this debate….have never been to anything like it!

TORONTO PARTICIPANT COMMENTS:

- EXCELLENT presentation!
- Way to go, girls!!
- All panel members were very well prepared, intelligent and very articulate (member of the general public)

CYBERSPACE COMMENT:

- .... the first patient-led, patient-organized Survivors’ Debates signal that the time has come for more dialog with increased participation by the very people whose stake and investment in treating cancer are greatest.

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.

Eye on DNA Exclusive Interview: http://tinyurl.com/23bs3z



Mission and Purpose:

The mandate of the Survivors’ Debate program(s) is to educate, to discuss and to escalate the patient/caregiver ovarian cancer voice at both the public and decision-making levels. To preserve autonomy, it is survivor-led/organized and encourages full public and healthcare professional participation. Open and spirited discussion is encouraged.


Why a Debate?

The purpose of the debate format is to understand the many views and sides of any particular issue - the pros and the cons of where we have been and where we are going. Our perspective is not one of a 'win-lose' situation, but to encourage understanding of existing issues and escalate informed and meaningful change. Debates are common within business, medical, research and scientific communities. It is time to bring these debates to the public with the Survivors' Debates forum(s) being the mechanisms to do so.

Novi, MI and Toronto, Canada: Focus

Debating the issues:

Awareness and Communication
Early Detection
Survival Rates
Access to Care
Genetics

Locations/Dates:Novi, Michigan
October 27th, 2007
Toronto, Canada
November 3rd, 2007


Further information on future conference locations/registration can be located on the sidebar of this page or email: sandipn@sympatico.ca.

September 30th, 2007:


Dear Patients and Healthcare Professionals:

Dr Yi Pan, (Neurologist) MD, PhD along with Annamarie DeCarlo, Managing Editor, Anne Arundel Medical Center will be moderating the Survivors' Debates in Detroit (Oct.27) and Toronto (Nov.3). The two principals of the debate are 8 & 9-year survivors Sandi Pniauskas and Carolyn Benivegna. We have 31 years of survivorship among us. Yi and Carolyn currently are in treatment for recurrent ovarian cancer. We are pleased with the support received from oncology nursing professionals, Bridget Capo and Pamela J. West.

These debates are by and for survivors, with an open-arms invitation to citizens, physicians, nurses, pharmacists, health care workers and of course, caregivers. There has been no corporate sponsorship.

We would like all citizens and healthcare professionals to know about these survivor-led forums; to let them know we are doing these forums. We wish to share the often-lost patient perspective, but also to bring a public voice to our concerns and issues which often times delay or complicate forward progression for the benefit of all.

We ask, simply, that you share the news, share the knowledge, and talk about this with your colleagues and communities. Everyone is welcome to attend and we encourage open and lively discussion.

Background information can be found through a recent interview published in 'Eye on DNA' conducted by Dr. Hsien-Hsien Lei.

Thank you.
Sandi Pniauskas
sandipn@sympatico.ca

Please visit link for Registration/Information: http://ovariancancerdebate.blogspot.com/


Recent Interview and Background Information:

Eye on DNA Exclusive Interview with Cancer Survivors Sandi Pniauskas and Carolyn Benivegna
by Dr. Hsien-Hsien Lei

http://tinyurl.com/23bs3z