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HOW REAL BREAST CANCER EXPERIENCES INFLUENCE TRIALS

Breast Cancer Trials was the first clinical trials group to invite people with a lived experience with cancer to comment and guide the planning and conduct of clinical trials research. These women make up our Consumer Advisory Panel. Former chair of the panel, Leonie Young, discusses the importance of this perspective in the clinical trials research process.

The Importance Of The Patient Experience

For those signing on to participate in a clinical trial, it can be reassuring to know that women who have a history of breast cancer have been involved in the planning of any new research.

For Breast Cancer Trials, this involves consulting with our Consumer Advisory Panel or CAP.

CAP is made up of women who have received a breast cancer diagnosis, and some have participated in a clinical trial.

Leonie Young is the former chair of Breast Cancer Trials Consumer Advisory Panel.

She said CAP is involved with Breast Cancer Trials research from concept development right through to patient care.

“Anybody considering a trial, especially if it’s badged with Breast Cancer Trials, should have a certain degree of confidence that people who’ve had that lived experience, who have been there done that, have actually looked at it and given their feedback on it.”

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Former chair of the Breast Cancer Trials Consumer Advisory Panel, Leonie Young, discusses the importance of the patient perspective in the clinical trials research process.

The Benefits Of Participating In A Clinical Trial

Ms Young said there are many common misconceptions regarding clinical trials.

“Nobody is disadvantaged on a clinical trial.”

“If you’re not on the treatment arm, you will still receive the golden standard treatment that everybody will receive if they’re not on a trial and when you think about it, if you go back a number of years, those drugs and those treatments were determined through the clinical trials research process” she said.

“Now what they’re looking at is the next step up, or the next phase. So, everything has gone through that clinical trials process. So, everyone should feel safe.”

One of the main benefits of participating in a clinical trial is being able to potentially access a new and better treatment. However, there are many other benefits according to Ms Young.

“It’s knowing that you’re part of a team, and knowing you are being monitored so closely and very regularly.”

“One of the fears that people diagnosed with cancer have is ‘how do I know that it hasn’t come back’,” she said.

“There is a real comfort in knowing that experts are keeping an eye on you and asking you questions and if people make a mention of a side effect, it triggers them to look at something. So, they’re being really closely monitored all the time.”

“I wasn’t on a trial when I received treatment a very long time ago, but I received the benefit of women who’d been on clinical trials before me and you know that your contributing to the future and to our daughters, and granddaughters and future women and men.”

Ms Young recommends anyone given the opportunity to participate in a clinical trial should consider it.

“You are monitored really carefully and you’re safe, and you have a chance of having access to the new drug that’s gone through scrutiny before humans are allowed to be trialled, maybe a step ahead of everybody else who has to wait maybe five or 10 years or more to get the treatment available.”

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Leonie Young

Former Chair of the Breast Cancer Trials Consumer Advisory Panel

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