CONSUMER INPUT VITAL FOR CLINICAL TRIALS RESEARCH

On International Clinical Trials Day, consumers are being acknowledged for their contribution to research and improved patient treatments and outcomes.

Each year on the 20 May, International Clinical Trials Day is held to acknowledge the world’s first controlled clinical trial by Scottish physician James Lind in 1747, in the treatment and cure of scurvy.

This year the Newcastle based research organisation, the Australia and New Zealand Breast Cancer Trials Group (ANZBCTG), is highlighting consumer involvement in clinical trials with the launch of a series of videos of members of their Consumer Advisory Panel. Women in the videos describe their own experience of breast cancer and why they support breast cancer clinical trials.

The ANZBCTG’s Director of Research, Professor John Forbes AM, says consumer involvement in the development and conduct of breast cancer clinical trials has been successful in Australia and has become a model for other clinical trial research organisations.

“The ANZBCTG’s Consumer Advisory Panel was one of the very first consumer committees in Australia to be set up for the purpose of providing consumer input into the planning and conduct of clinical trials research,” Professor Forbes said.

“Their insights and views on protocols and relevant research documents, such as patient information and consent forms, have improved patient materials for women participating in breast cancer clinical trials and have been invaluable for researchers in the development of trials.”

Today there are eight members of the ANZBCTG’s Consumer Advisory Panel, all of whom have had breast cancer and most have participated in a clinical trial. Their contribution has become an integral part of the ANZBCTG’s research program. They provide an invaluable consumer perspective on relevant issues about clinical trials including recruitment, patient information for informed consent, new trial protocols and ethical issues.

They also represent consumer views in the wider community, raise community awareness of breast cancer clinical trials research and advocate for women who may be participating in or have participated in a clinical trial.

The ANZBCTG is Australia’s national organisation dedicated entirely to breast cancer clinical trials research. It conducts a national clinical trials research program for the treatment, prevention and cure of breast cancer. The research program involves multicentre clinical trials and collaboration with more than 80 institutions and over 700 researchers throughout Australia and New Zealand.

More than 14,000 women have participated in ANZBCTG breast cancer clinical trials. The Breast Cancer Institute of Australia is responsible for ANZBCTG’s fundraising.

Leonie Young is the Chair of the ANZBCTG’s Consumer Advisory Panel and one of the inaugural members.

“The ANZBCTG’s foresight to include well informed consumer advocates in its research program, when it wasn’t usual practice, has helped set a precedent for other cancer research groups. People who have had a personal cancer experience can often provide a unique perspective. So the partnership nurtured between ANZBCTG researchers and Consumer Advisory Panel members, has enhanced the research program.”

Professor Forbes is the Director of Research at the ANZBCTG, Professor of Surgical Oncology at the University of Newcastle and Director of the Department of Surgical Oncology at the Calvary Mater Newcastle.

Media contact:

Anna Fitzgerald, ANZBCTG Communications Manager