Shannon Kadar was diagnosed with ovarian cancer in February of 2019. “I was 40 years old, shocked, scared and didn’t know where to turn,” she says. “I began an Internet search of organizations or agencies that might be able to help me battle this disease, and Ovarian Cancer Canada was the first one to come up. I immediately made a phone call and was greeted by a friendly volunteer who put me in touch with other women in my area also facing the same diagnosis as me.”
Inspired by the connections she made, Shannon has now joined 14 other women from across Canada in the Patient Partners in Research group – a transformative and vital component of Ovarian Cancer Canada’s OvCAN research initiative.
OvCAN Patient Partners have important roles in a wide range of activities, from reviewing clinical trial funding applications to sharing their lived experience directly with ovarian cancer researchers and scientists. Two group members served as panelists for a session about OvCAN at Ovarian Cancer Canada’s national symposium in October.
Ensuring ongoing, meaningful involvement from Teal Sisters (women who have been diagnosed with ovarian cancer), and amplifying their voices, is at the heart of all the work being done by Ovarian Cancer Canada. This commitment inspired the development of the Patient Partners program as a cornerstone component of OvCAN. “We deserve a voice at the table of researchers, oncologists and scientists,” Shannon says. “We are the ones undergoing the clinical trials, enduring the side effects of treatments, and putting ourselves on the line in hopes of fighting back against this brutal disease.”
Colleen Tkachuk, an OvCAN Patient Partner from Saskatoon, agrees. “I feel that if we work with doctors, researchers, and the public to bring focus to ovarian cancer, lives will be saved.” This sense of purpose drove Colleen during her recent work on the review committee for an OvCAN research grant, which let her “go ‘inside the minds’ of those that are focusing on ovarian cancer research, to see what they feel is important to look at and why,” she says. “By talking with the other reviewers as well, it has given me the sense that they too are going to be looking at things from our eyes and place a focus on what we truly need in regard to research, treatments, and hopefully, prevention.”
Her contributions, and those of her fellow Patient Partners, are already making a difference. “They bring a perspective that cannot be duplicated by physicians and scientists,” says Dr. David Gershenson, an academic reviewer and MD who joined three Patient Partners on the review panel for the first round of OvCAN-funded clinical trials. “They can provide important information on the quality and appeal of trials to patients, and also concerns about adverse events, quality of life, and decision making.”
Patient Partners also work directly with IRICoR, a Canadian not-for-profit organization focused on the transformation of research results into innovative cancer therapies. Engaging patients in the evaluation process has been “an eye-opening experience,” says IRICoR President and CEO Dr. Nadine Beauger. “We have had the privilege, through OvCAN, to hear how the potential projects could have an impact on the lives of the people who matter most in the process, the patients.”
OvCAN’s reach, scope, and impact is growing. News about new trials, research, and treatment options can’t come fast enough for anyone facing a diagnosis, which is something that Patient Partner Marise Daigle understands all too well. “I’m very lucky,” she says. “I live in Montreal; I’m close to the hospital. It was easy for me to take part in a clinical trial. I’m also lucky enough that I could be treated by one of the world’s top ovarian cancer researchers and gynecologists. I know it’s not like that for every woman. They could live in remote areas, or places where there aren’t trials going on, or no research centres, or no top researcher.”
For Shannon, who lives in the small community of Belle River, Ontario, the OvCAN Patient Partners program – and Ovarian Cancer Canada in general – has become a vital part of her support community. “I’ve met and become colleagues with a wonderful group of strong, dedicated, and passionate women, who are as determined as I am to speak up and enact change for women facing ovarian cancer,” she says. “Having the opportunity to have my voice heard, together with the voices of other ovarian cancer survivors, is a game changer.”
OvCAN’s goal, simply put, is to improve the outcomes of women diagnosed with ovarian cancer. As Marise points out, though, this is a many-layered proposition. “Surviving is one thing,” she says. “We want to have a full life – contribute, love, be loved. Surviving is not enough.”
Ovarian Cancer Canada’s OvCAN research initiative is the result of advocacy efforts that successfully culminated in a historic $10 million investment in ovarian cancer research by the Government of Canada. This five-year funding has since grown with the governments of Nova Scotia and Saskatchewan each committing an additional $1 million, and the private sector contributing a further $2 million.
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