Public Policy Priority #3: Ensuring the Participation of Educated Patient Advocates in Science Research and all Levels of Health Care Decision Making

Ensuring the Participation of Educated Patient Advocates in Science Research and all Levels of Health Care Decision Making

Background

The voice of educated patient advocates must be part of all levels of health care decision-making which affects their lives. Patient participation has been a tenet of the National Breast Cancer Coalition (NBCC) since its inception. NBCC continues to work to ensure that educated patient advocates who represent a constituency have a meaningful “seat at the table” in all levels of health care decision making which affects their lives.

Why Patient Advocates are Necessary

Educated patient advocates provide a unique perspective that others cannot offer. They are the ones who ultimately receive health care services and, along with their families, are required to navigate the complexities of the health insurance and healthcare delivery systems. They have no agenda in the scientific community other than looking for the best science and saving lives. They have no conflict of interest. Their perspective cannot be duplicated by the doctors who care for them or the scientists searching for answers, even if these doctors and scientists are patients. A lay advocate perspective is key to moving forward to the end of breast cancer.

Patient Advocates must:

• Have a patient-led, patient-centered organization with a patient constituency to which they are responsible and accountable;
• Have been personally affected by the disease; and
• Be knowledgeable, trained, prepared, and confident in their ability to participate in the decision-making process of science and medicine.