Advocacy in Action: Leveraging the Power of Patient Voices to Impact Ovarian Cancer Outcomes in Canada.

Alicia Tone,Cailey Crawford,Talin Boghosian,Elisabeth Baugh,Alison Ross

doi:10.3390/curroncol29020106

Alicia Tone, Cailey Crawford + Show 3 more

Open Access

https://doi.org/10.3390/curroncol29020106

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Abstract

Prior to 1997, ovarian cancer (OC) was a ‘poor target’ for patient advocacy. At that time, there were only three OC researchers in Canada, little information available for women diagnosed, and no community of survivors existed. The Corinne Boyer Fund to advance OC was founded in 1997 (later renamed the National Ovarian Cancer Association (NOCA) and subsequently Ovarian Cancer Canada (OCC)), and a Blueprint for Action was established. NOCA developed training programs for public education, partnered with clinicians and scientists, established a Tissue Banking Network across Canada In 2015, the Ladyballs awareness campaign was launched nationally, giving the community a presence and voice. Strategic planning by the organization put advocacy for research funding as a top priority and, working with patients and researchers across the country, petitioned the government for C$10 million in research funding. In 2019, OCC received the funding. In 2020, the OvCAN project was launched with the aim to improve the outcomes of women diagnosed with OC. In the first three years of OvCAN, a pan-Canadian team of 25 Patient Partners was established, and 41 projects to date on research models, pre-clinical and clinical trials covering a wide spectrum of OC types have been funded.

Highlights

Prior to 1997, ovarian cancer (OC) was a ‘poor target’ for patient advocacy
Can be traced back to the 14th century Ming dynasty [1], patient advocacy emerged as a movement in the 1920s as rights for patients became a key role for nurses in their code of ethics and the 1940s, as WWII brought a Citizen Advice Bureau to Great Britain
Thomas et al explore a conceptual framework of self-advocacy in women with cancer, and the constructs necessary: informed decision-making, effective communication with health care providers, and connected strength, which all contribute to developing the ability to self-advocate and subsequently the collective role of individuals in an advocacy movement [2]

Summary

Introduction

Prior to 1997, ovarian cancer (OC) was a ‘poor target’ for patient advocacy. At that time, there were only three OC researchers in Canada, little information available for women diagnosed, and no community of survivors existed. Examining the steps in successful advocacy techniques which built the ovarian cancer movement in Canada, one must consider the strategic business planning of the patient organization over 20 years.

Results

Conclusion