Ovarian Cancer presentation: Survivors' Debate presentation
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- 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‟ 6
- 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 7
- 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 8
- 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) 9
- 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 % 10
- 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. 11
- 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. 12
- 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). 14
- 15. “Our lives begin to end the day we become silent about things that matter.” Martin Luther King, Jr. 15
- 16. Survivors’ Debate: The Past Decade in Ovarian Cancer Dedicated to: Carolyn Benivegna Further information 16
- 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 17
- 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
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