E-poster Presentation 2014 World Cancer Congress

Enabling consumers to have a Seat at the Table (#1099)

Lisa Morstyn 1 , Kathryn Wells 1 , Maxine Morand 1
  1. Breast Cancer Network Australia, Camberwell, VIC, Australia

Background:

Breast Cancer Network Australia (BCNA) is the peak national organisation for Australians personally affected by breast cancer, representing more than 90,000 individual members across Australia. We support, inform, represent and connect people whose lives have been affected by breast cancer.

Aim:

BCNA’s Seat at the Table (SATT) program aims to ensure the voices of Australians affected by breast cancer are heard wherever decisions about breast cancer treatment, services and care are taken.

Strategy:

Established in 2000, the SATT program recruits, trains, appoints and supports women affected by breast cancer to work as consumer representatives. Women attend a three day training program which discusses the latest in breast cancer science and research, clinical trials, genetics, survivorship issues and how to work as a consumer representative.

Program:

More than 65 women across Australia participate in the SATT program. They sit on international, national, state and local research projects and advisory committees, working collaboratively with researchers, clinicians, policy makers and health service providers to improve the provision of treatment and services for those affected.

Examples of projects BCNA Consumer Representatives have participated in include:

• Cancer Australia Management of central nervous system (CNS) metastases in secondary breast cancer Working Group

• The Poche Centre’s study, Quality of life following immediate, delayed or no breast reconstruction

• kConFab Executive Committee

• Queensland University of Technology Women’s Wellness after Cancer Program

Outcomes:

SATT helps ensure the voices and needs of Australians affected by breast cancer are taken into account in decisions about treatment, services and care.

BCNA Consumer Representatives contribute in many ways:

• providing input on funding applications 

• advising on project methodologies and results

• assisting with information statements and consent documentation

• disseminating research findings

• assisting with clinical trial recruitment.

Seat at the Table provides a model for consumer involvement in health policy, research and service delivery.