The Canadian Cancer Trials Group Central Operations and Statistics Centre will be closed on Monday, July 1, 2019 for Canada Day. Regular business hours will resume on Tuesday, July 2 at 8:30 am EDT.

Putting patients first

Leaning from patients at every step
Thursday, August 23, 2018
Canadian Cancer Trials Group investigator Janet Dancey, Chris O'Callaghan, Wendy Parulekar

For the scientists at CCTG, their inspiration comes from the people their questions are designed to help: patients living with cancer.

“These people are at their most vulnerable,” says Dr. Dancey. “When they enroll in a trial, they do it because they hope to get the best treatment. But they also do it to help answer an important question, if not for themselves, then for everyone who follows them. For me, these people are heroes. In the face of adversity, they act for the greater good.”

“We’re asking them to participate in something that doesn’t necessarily guarantee a benefit for them personally,” says CCTG Senior Investigator Dr. Christopher O’Callaghan.

Most of the trials CCTG performs are randomized experiments. Patients sign on without knowing if they will actually receive the promising new treatment being tested.

“There’s a real altruism there,” Dr. O’Callaghan says.

“Patients don’t know what they’re going to get, but still they participate, and in doing so, they give new meaning to their journey. It’s no longer just personal. It’s much bigger than that.”

Clinical trials are a way to transform the personal journey of a cancer patient into a collective journey, though the road may be long with progress measured in small steps. It used to be that all clinical trial questions were developed in the lab or the conference room. More often now, they start with the people who have the most intimate understanding of cancer.

From the beginning of her career, Dr. Wendy Parulekar,  a Senior Investigator at CCTG, has recognized that cancer patients want to play an active role in their treatment. “The first study I was involved in looked at pain control and palliation in men with bone metastases from prostate cancer,” she says. “It was obvious that they were in pain, but that didn’t stop them from sharing information with us. Their commitment was inspirational.”

In their continual search for the best treatment, CCTG scientists make a point of listening to and learning from their patients at every step, through their participation in a number of key committees and through consultations.

This feedback is particularly important when a trial is being designed. “Asking the right question is just one ingredient of a successful trial,” Dr. Parulekar says. “Patients also have to want to participate in it.
We can’t make assumptions, so we ask patients to look at our questions, to think about the trials we’re proposing, and tell us if they find them meaningful.”

By asking those questions and listening to the answers, CCTG scientists are making sure the trials they conduct answer the questions that matter most to the people they’re committed to serving.