2. Survivors’ Debate:
The Past Decade in Ovarian Cancer
Pamela J. West
RN (EC), NP-Adult, Rouge Valley Health System Toronto, ON
Carolyn Benivegna,
Ovarian Cancer Survivor/BRCA Novi, MI, USA
Sandi Pniauskas
2
Ovarian Cancer Survivor/Lynch Syndrome Whitby, ON
3. Survivors’ Debate:
The Past Decade in Ovarian Cancer
Purpose/Rationale
Goals
Methods
Implementation
Analysis
Results
Conclusions 3
4. Survivors’ Debate:
The Past Decade in Ovarian Cancer
Purpose/Rationale:
Mission Statement - visions/ values:
• Facilitate and lead the way with open and public dialog;
organized/led by ovarian cancer survivors* (Patients‟ Voice)
• Respect for the well-being of self and others
• Inclusiveness without fear of recrimination /prejudice
• Apolitical
• Human rights values ; ability to focus on the vision
4
5. The Lived (Experiential) Experience (Bedside to Benchside):
Family Doctor/Nurse/Nurse Practitioner/Medical Oncologist/Gynecologic Oncologist/
Radiation Oncologist/Technician/Clinical Trials/Informed Consent/Pharmacist/
Secretary/Assistant/Patient Navigator vs. Nurse Navigator/Home Healthcare
Professional/Gastroenterologist/Urologist/Cardiologist/Social Worker/CT vs. MRI vs. PET/ CA
125/Genetic Researcher/Genetic Counselor/Family/Friends/Face-to-Face Support/Peer-ledvs.
Professionally-led Support Groups/Online Friends/Referrals to other online
Friends/Nonprofits/Hospital Fundraisers/Non-Profit Fundraisers/Palliative Care
Physician/PatientSafety/Palliative Care Nurse/Palliative Care/ Homecare/Social
Worker/PalliativeHospiceCareNeeds&Assessment&Implementation/Trust/Volunteerism/WaitTimes/
Insurance……………understanding,paperwork, money, fear…….
Hospital
Professional
Caregiver
Oneself
Family Research
Today’s
Issues
6. Survivors’ Debate:
The Past Decade in Ovarian Cancer
Goals :
• Debate (Review) history and current status of affairs which affect
international ovarian cancer survivor* populations
• Bridge the gap(s) of the „lived‟ experience in real time (Patients‟ Voice)
• Bring the current „behind-the-scenes „ dialogues public
• Inclusiveness
• Intellectual „properties‟
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7. Survivors’ Debate:
The Past Decade in Ovarian Cancer
Methods and Implementation :
Step 1: Interest
Step 2: Who What Where When How
Step 3: Mission Statement/Survey/Research/Debate Presentations
(Pro/Con/Rebuttals)
Step 4: Funding
Step 5: Results of Surveys and Participants‟ Responses
Step 6: Publications/Video broadcast
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8. Survivors’ Debate:
The Past Decade in Ovarian Cancer
Analysis:
Key Points
(Evidenced Based Research)
Ovarian Cancer Debate Topics – Pro/Con:
Awareness & Communication
Early Detection
Survival Rates
Genetics
Access to Care
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9. Survivors’ Debate:
The Past Decade in Ovarian Cancer
Supported by:
Online Anonymous Survey (n=303)
Evidence-based recap – key factors affecting spectrum of issues
concerning care/concerns of ovarian cancer communities (international)
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10. 2007 Online Public Poll Results: % (Pniauskas/Survivors’ Debate)
n=303
Do you believe in general Yes: No: Don’t know:
terms that ovarian cancer
has improved since 1997? 48.2 25.4 26.4
Without searching the All 12: Bloating: Pelvic/Abdominal Difficulty Urinary
internet or other resources, Pain: eating/feeling symptoms:
SYMPTOMS(S) of ovarian full:
cancer is/are:
60.4 58.1 54.1 48.2 46.9
(top 5 from 12 suggestions)
A recent concensus None/One: Two: Three: Four: Five:
statement indicates that
ovarian cancer has: 13.9 1.0 7.6 23.1 43.9
I am a/an: Survivor: Family/Friend/ HCP: Researcher: Other:
Spouse:
78.9 17.1 0.7 0.0 3.3
Your relationship with ***** ****
Your Oncologist is: Excellent Satisfactory
52.8 23.1 75.9 %
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11. Survivors’ Debate:
The Past Decade in Ovarian Cancer
Conclusions:
“Acknowledging isolated examples, we have been unsuccessful in truly
„hearing‟ and reacting in a timely manner to the Patients‟ Voices in healthcare
and in particular to cancer care. The mechanisms and functions of the Patients‟
Voices have been researched and discussed widely in medical circles, but still
in fact, the ultimate decisions are subject to many biases, which ultimately do
not reflect the intellect, integrity, nor, the pertinent issues known within
consumer/(e)patient communities.
The biases are reflections of matters of clinical research interpretations which may and
often do not address the concerns living and surviving with and ultimately dying with
ovarian cancer. …and yet – as evidenced by the survey - patients still have the
highest regard and respect for their healthcare providers.
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12. ….Furthermore, research focused on cancer e-communities has indicated
that cancer patients‟ communications are alive, well, vibrant and include a
high degree of clinically correct opinions and experiences. These e-
communities of cancer patients speak to the issues beyond politics,
perceived boundaries, ego and the bureaucracies – historical barriers.”
The intention of the Ovarian Cancer Survivors‟ Debate(s) was to bring these
behind-the-
behind-the-scenes discussions to open and transparent public forums.
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13. Access to Care – Outstanding Issues
THEN NOW
Who, When, Where, What and How Who, When, Where, What and How
Insurance/funding Insurance/funding
Distance travel Distance travel
Lack of support ie; elderly, single status, one Lack of support ie; elderly, single status, one
parent families parent families
Racial/cultural disparities/alternative lifestyles Racial/cultural disparities/alternative lifestyles
Disparities IN cancers Disparities IN cancers
Clinical trial criteria Clinical trial criteria
Psychosocial counseling Psychosocial counseling
Patient Safety Procedures: Adverse events/Safety/Apology
Continuity of Care Continuity of Care
14. Survivors’ Debate:
The Past Decade in Ovarian Cancer
“Resistance , criticism and fear of this novel debate-style concept proved to
be erroneous, as provided from both the lay and professional feedback
conference summaries.”
C. Benivegna & S. Pniauskas
Concerning Issues:
Medical communities vastly chose to ignore this patient-led endeavor.
Pharmaceutical support was declined.
Concept was embraced by selected hcps/lay population(s).
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15. “Our lives begin to end the day we
become silent about things that
matter.”
Martin Luther King, Jr.
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17. Survivors’ Debate:
The Past Decade in Ovarian Cancer
Video clip: (Novi, MI)
via Google video http://tinyurl.com/5jfrrh
email: sandipn@sympatico.ca
Carolyn Benivegna: PRO side debate presentation
Sandi Pniauskas: CON side debate presentation
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18. Survivors’ Debate:
The Past Decade in Ovarian Cancer
Special Thanks and Acknowledgements:
Dr Yi Pan, MD
Neurologist/Ovarian Cancer Survivor
Annamarie DeCarlo
Ovarian Cancer Survivor
Ovarian Cancer Survivor-Participants, Families and Friends
Survey Participants
Bridget Capo, RN
MI, USA
Dr. V. Benivegna 18
