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Ovarian Cancer presentation: Survivors' Debate presentation

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Ovarian Cancer presentation: Survivors' Debate presentation

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  2. 2. Survivors’ Debate: The Past Decade in Ovarian CancerPamela J. WestRN (EC), NP-Adult, Rouge Valley Health System Toronto, ONCarolyn Benivegna,Ovarian Cancer Survivor/BRCA Novi, MI, USASandi Pniauskas 2Ovarian Cancer Survivor/Lynch Syndrome Whitby, ON
  3. 3. Survivors’ Debate: The Past Decade in Ovarian CancerPurpose/RationaleGoalsMethodsImplementationAnalysisResultsConclusions 3
  4. 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. 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 HealthcareProfessional/Gastroenterologist/Urologist/Cardiologist/Social Worker/CT vs. MRI vs. PET/ CA125/Genetic Researcher/Genetic Counselor/Family/Friends/Face-to-Face Support/Peer-ledvs.Professionally-led Support Groups/Online Friends/Referrals to other onlineFriends/Nonprofits/Hospital Fundraisers/Non-Profit Fundraisers/Palliative CarePhysician/PatientSafety/Palliative Care Nurse/Palliative Care/ Homecare/SocialWorker/PalliativeHospiceCareNeeds&Assessment&Implementation/Trust/Volunteerism/WaitTimes/Insurance……………understanding,paperwork, money, fear……. Hospital Professional CaregiverOneselfFamily Research Today’s Issues
  6. 6. Survivors’ Debate: The Past Decade in Ovarian CancerGoals :• Debate (Review) history and current status of affairs which affectinternational 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. 7. Survivors’ Debate: The Past Decade in Ovarian CancerMethods and Implementation :Step 1: InterestStep 2: Who What Where When HowStep 3: Mission Statement/Survey/Research/Debate Presentations(Pro/Con/Rebuttals)Step 4: FundingStep 5: Results of Surveys and Participants‟ ResponsesStep 6: Publications/Video broadcast 7
  8. 8. Survivors’ Debate: The Past Decade in Ovarian CancerAnalysis:Key Points(Evidenced Based Research)Ovarian Cancer Debate Topics – Pro/Con: Awareness & Communication Early Detection Survival Rates Genetics Access to Care 8
  9. 9. Survivors’ Debate: The Past Decade in Ovarian CancerSupported 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. 10. 2007 Online Public Poll Results: % (Pniauskas/Survivors’ Debate) n=303Do you believe in general Yes: No: Don’t know:terms that ovarian cancerhas improved since 1997? 48.2 25.4 26.4Without searching the All 12: Bloating: Pelvic/Abdominal Difficulty Urinaryinternet 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 thatovarian cancer has: 13.9 1.0 7.6 23.1 43.9I am a/an: Survivor: Family/Friend/ HCP: Researcher: Other: Spouse: 78.9 17.1 0.7 0.0 3.3Your relationship with ***** ****Your Oncologist is: Excellent Satisfactory 52.8 23.1 75.9 % 10
  11. 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 healthcareand in particular to cancer care. The mechanisms and functions of the Patients‟Voices have been researched and discussed widely in medical circles, but stillin fact, the ultimate decisions are subject to many biases, which ultimately donot reflect the intellect, integrity, nor, the pertinent issues known withinconsumer/(e)patient communities.The biases are reflections of matters of clinical research interpretations which may andoften do not address the concerns living and surviving with and ultimately dying withovarian cancer. …and yet – as evidenced by the survey - patients still have thehighest regard and respect for their healthcare providers. 11
  12. 12. ….Furthermore, research focused on cancer e-communities has indicatedthat cancer patients‟ communications are alive, well, vibrant and include ahigh 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 thesebehind-the-behind-the-scenes discussions to open and transparent public forums. 12
  13. 13. Access to Care – Outstanding Issues THEN NOWWho, When, Where, What and How Who, When, Where, What and HowInsurance/funding Insurance/fundingDistance travel Distance travelLack of support ie; elderly, single status, one Lack of support ie; elderly, single status, oneparent families parent familiesRacial/cultural disparities/alternative lifestyles Racial/cultural disparities/alternative lifestylesDisparities IN cancers Disparities IN cancersClinical trial criteria Clinical trial criteriaPsychosocial counseling Psychosocial counselingPatient Safety Procedures: Adverse events/Safety/ApologyContinuity of Care Continuity of Care
  14. 14. Survivors’ Debate: The Past Decade in Ovarian Cancer“Resistance , criticism and fear of this novel debate-style concept proved tobe erroneous, as provided from both the lay and professional feedbackconference summaries.”C. Benivegna & S. PniauskasConcerning 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. 15. “Our lives begin to end the day webecome silent about things that matter.”Martin Luther King, Jr. 15
  16. 16. Survivors’ Debate:The Past Decade in Ovarian Cancer Dedicated to: Carolyn Benivegna Further information 16
  17. 17. Survivors’ Debate:The Past Decade in Ovarian Cancer Video clip: (Novi, MI) via Google video http://tinyurl.com/5jfrrhemail: sandipn@sympatico.caCarolyn Benivegna: PRO side debate presentationSandi Pniauskas: CON side debate presentation 17
  18. 18. Survivors’ Debate: The Past Decade in Ovarian CancerSpecial Thanks and Acknowledgements:Dr Yi Pan, MDNeurologist/Ovarian Cancer SurvivorAnnamarie DeCarloOvarian Cancer SurvivorOvarian Cancer Survivor-Participants, Families and FriendsSurvey ParticipantsBridget Capo, RNMI, USADr. V. Benivegna 18
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