THE ROLE OF PATIENT ADVOCATES IN CLINICAL TRIALS

DR. SARA NASSER MRCOG

CHARITE COMPREHENSIVE CANCER CENTER, BERLIN, GERMANY

PAN-ARABIAN RESEARCH SOCIETY FOR GYNECOLOGIC ONCOLOGY (PARSGO E.V)

WHAT IS A CLINICAL TRIAL

WHAT IS A CLINICAL TRIAL

• Study designed to answer a specific scientific question
• Evaluate something new
• Involves participants and an intervention
• Scientific methods and rules
• Team Effort!

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PUTTING THE LENS ON CLINICAL TRIALS

Trials are quality indicators for healthcare

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• Du Bois A, Rochon J, Lamparter C, Pfisterer J; AGO Organkommission OVAR Pfisterer. Pattern of care and impact of participation in clinical studies on the outcome in ovarian cancer. Int J Gynecol Cancer. 2005 Mar-Apr;15(2):183-91. doi: 10.1111/j.1525-1438.2005.15202.x. PMID: 15823098.
• Sehouli J, Kostromitskaia J, Stengel D, du Bois A. Why institutions do not participate in ovarian cancer trials -- results from a survey in Germany. Onkologie. 2005 Jan;28(1):13-7. doi: 10.1159/000082183. PMID: 15591726.

PUTTING THE LENS ON CLINICAL TRIALS

• Trials are quality indicators for healthcare
• Patients in clinical trials have better outcomes than those who do not participate in clinical trials

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• Du Bois A, Rochon J, Lamparter C, Pfisterer J; AGO Organkommission OVAR Pfisterer. Pattern of care and impact of participation in clinical studies on the outcome in ovarian cancer. Int J Gynecol Cancer. 2005 Mar-Apr;15(2):183-91. doi: 10.1111/j.1525-1438.2005.15202.x. PMID: 15823098.
• Sehouli J, Kostromitskaia J, Stengel D, du Bois A. Why institutions do not participate in ovarian cancer trials -- results from a survey in Germany. Onkologie. 2005 Jan;28(1):13-7. doi: 10.1159/000082183. PMID: 15591726.

PUTTING THE LENS ON CLINICAL TRIALS

• Trials are quality indicators for healthcare
• Patients in clinical trials have better outcomes than those who do not participate in clinical trials
• Ethnic Minorities, LMICs, and Women have been underrepresented in clinical trials

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• Du Bois A, Rochon J, Lamparter C, Pfisterer J; AGO Organkommission OVAR Pfisterer. Pattern of care and impact of participation in clinical studies on the outcome in ovarian cancer. Int J Gynecol Cancer. 2005 Mar-Apr;15(2):183-91. doi: 10.1111/j.1525-1438.2005.15202.x. PMID: 15823098.
• Sehouli J, Kostromitskaia J, Stengel D, du Bois A. Why institutions do not participate in ovarian cancer trials -- results from a survey in Germany. Onkologie. 2005 Jan;28(1):13-7. doi: 10.1159/000082183. PMID: 15591726.

WHAT KIND OF TRIALS ARE THERE?

• Surveys:
• Set of questions for patients or doctors to answer a specific question/set of questions

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WHAT KIND OF TRIALS ARE THERE?

• Clinical Trials

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WHAT KIND OF TRIALS ARE THERE?

• Qualitative Trials:
• Based on interviews and focused group discussions
• Answers open-ended questions

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MYTHS AND FACTS ABOUT CLINICAL TRIALS

MYTHS AND FACTS ABOUT CLINICAL TRIALS

• Trial participation means they do an experiment on me

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MYTHS AND FACTS ABOUT CLINICAL TRIALS

• Trial participation means they do an experiment on me

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MYTHS AND FACTS ABOUT CLINICAL TRIALS

• If I am in a trial I will be paid money

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MYTHS AND FACTS ABOUT CLINICAL TRIALS

• If I am in a trial I will be paid money

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MYTHS AND FACTS ABOUT CLINICAL TRIALS

• Being in a trial mean I may have more appointments than other patients or see the doctors/nurses more often

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MYTHS AND FACTS ABOUT CLINICAL TRIALS

• Being in a trial mean I may have more appointments than other patients or see the doctors/nurses more often

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PATIENT ADVOCATES

• Designing and driving clinical trials
• Unmet needs vs. scientific/clinical needs
• Involvement early on
• Need to be where the decisions are being made
• Part of the interdisciplinary team
• Trained representatives-Experts
• PARSGO-WECAN Courses

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PATIENT ADVOCATES WITHIN TUMORBOARDS