THE IMPORTANCE OF PATIENTS HAVING A VOICE IN THEIR TREATMENT

Rebecca Angus is a senior podiatrist with a personal history of breast cancer, being diagnosed with the disease in 2018 at just 33 years old. She is also a member of the Breast Cancer Trials Consumer Advisory Panel, who provide a patient’s perspective in all aspects of clinical trials research.

We spoke to her about the importance of patients having a voice when it comes to their treatment.

“So, in an era where information and collaboration with consumers on providing treatment optimisation and designing the best clinical trials with consumer engagement, we discussed what the consumer’s perspective is on endpoints.”

“I think what we found was that there is a real lack of evidence and understanding around clinical endpoints. So, in the future I feel that we need to empower patients with education and more understanding around what clinical endpoints mean and what they mean for their treatment.”

“That’s only going to happen through forming the right language around clinical endpoints and with treatment practitioners actually engaging with their patients and explaining it a little bit better so that they understand what’s going on, what the outcomes are, and what the aim is for their current treatment.”

How can understanding the ‘end point’ empower patients in their treatment decisions and discussions with their healthcare providers?

“I guess it just depends on how much patients are reading the research and how much they really understand. So obviously, we all want overall survival. But we also want good quality of life with our treatments as well. And there is a balance between both of those things. So, I feel like understanding what a treatment is going to do for you, is important for the patients to understand all the side effects.”

“So, think it’s important that patients understand all aspects of how it’s going to impact them. We all know that cancer treatment does have many impacts, and impacts different aspects of a patient, but it is also reassuring, for patients to know that through being part of a clinical trial, the researchers are going to look at all aspects of the patient and not just focusing on what a particular drug is going to do to you.”

What are your hopes for the future?

“I really hope for more consumer engagement on clinical endpoints and working out what’s important to patients. Whether or not it is more quality of life aspects of a clinical trial, and having them put into earlier phases in clinical trials so that we are capturing some of the patient voice earlier on.”