This information is transferred electronically to BCEHP’s database system, called BC Early Hearing Surveillance Tool (BEST). Personal information is stored in a secure manner. The BCEHP uses an information system called BEST to provide the information link between hospital screening, community services and doctors, to support direct patient care, program management and research related to early hearing loss in BC. The system keeps personally identifiable health information about the services and treatments your baby receives.

BEST data is primarily used to provide care wherever that occurs to — in a home, in the community unit or in a hospital. Those participating in your care are allowed to see your personal information. Strict controls are maintained to ensure only those who are actively treating you have access and to only what they need.

Data that does not identify a specific baby is used for administration of the BCEHP improving services, education and research. Data may only be used for research if it meets strict legal requirements. All research requests are reviewed by the BCEHP Research Committee and the data steward before any data is disclosed. Data used in research and education projects supports positive changes to patient care and better health outcomes.

BCEHP has policy and processes in place to protect privacy. Anyone who accesses BEST data must protect your baby’s information (electronic or paper) from inappropriate or unauthorized use and disclosure. Measures include the use of frequently changed passwords, security for electronic transmission of data and physical security. Staff members sign confidentiality agreements and receive training and supervision to ensure they understand their responsibility. They must maintain the confidentiality of your information even if they no longer provide care to your baby.

BEST data is disclosed on a need-to-know basis for care of your baby or where permitted by law. Disclosures are based on the law, best practices and professional ethics. Disclosure for research is subject to specific law and policy.

Where the BCEHP purchases hearing aids for the child the audiologist at the local clinic will order the hearing aid(s) directly from the manufacturer. The audiologist will ask you to complete a consent form to disclose your child’s personal information (including date of birth, name and audiogram) to the manufacturer of the hearing aid. This information is needed to register and activate the hearing aid warranty and to help choose the best model of hearing aid for your child.

Information is kept for seven years beyond the time of last contact, or in the case of minors, for seven years beyond the time that the individual reaches their age of majority at 19 years.

Throughout your baby’s care your health-care team will communicate with you about the services your baby is receiving. You have the right to know what information is kept about your baby, to see it and to correct it. You can request information at any time.