Ovarian Cancer Advocates Focus on Patients’ Perspectives

In April, SHARE ovarian cancer advocates raised awareness about the concerns of patients and long-term survivors by presenting posters at two different cancer conferences -- the New York OB Gyn Society and the American Association of Cancer Research (AACR). They reached obstetricians and gynecologists, residents and fellows from New York training programs in obstetrics and gynecology, and thousands of scientists, clinicians, and advocates from around the country.

SHARE advocates Lorraine Bajada, Annie Ellis, Judi Gordon, Andrea Herzberg, and Gwen Harding-Peets helped recruit participants and fine-tune questions for a patient-led discussion led by Dr. Melissa Frey and Dr. Stephanie Blank. The two doctors presented a poster based on this work at the New York OB Gyn Society entitled, "A qualitative study of ovarian cancer survivors' perceptions of endpoints and goals of care." The study addressed patients' expectations of ovarian cancer treatments, and Drs. Blank and Frey are planning to submit the manuscript for publication in a peer-reviewed journal.

"We especially want to get survivors' true messages to physicians using a means of communication they value: the peer-reviewed publication," said Dr. Blank. "Our ultimate goal is to improve physician/survivor communication and thereby improve care for our survivors."

A qualitative study of ovarian cancer survivors' perceptions of endpoints and goals of care

Working as an independent Ovarian Cancer Survivor Advocate, Annie Ellis presented her poster, "Navigating Uncharted Waters: Exploring the Resources Patients Use to Manage Long-Term Recurrent Ovarian Cancer," at the AACR. Her poster was based on a survey she conducted of survivors who've had five or more lines of treatment or have managed persistent or recurrent disease for five or more years.

"We want to make sure we don't forget the concerns of women who manage recurrent disease," said Annie, who participated in the AACR SSP (ScientistSurvivor Program).

Navigating Uncharted Waters: Exploring the Resources Patients Use to Manage Long-Term Recurrent Ovarian Cancer

We applaud the excellent work of these advocates and physicians in bringing attention to the perspective of patients!


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