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Securing confidence in an HIV/AIDS confidential database.


Int Conf AIDS. 1998;12:973 (abstract no. 44184). Unique Identifier :

ISSUES: The HIV Ontario Observational Database (HOOD) is a voluntary database designed to collect clinical information about HIV/AIDS in Ontario, Canada for the purpose of clinical, epidemiological and health services research. At its inception, concerns about confidentiality and safety of information for persons with HIV/AIDS whose clinical information was being collected in the HOOD were raised. Prospective participants and the community requested clarity and assurance about confidentiality and data collection. Prospective participants questioned whether their names will be stored in the database, who owns their data and whether their data was being shared. PROJECT: To establish prospective enrolees' confidence in enroling in the HOOD. To confirm security of the clinical data remain in confidential. To assign a unique identifier to each participant without using participants' names. To ensure signed consent forms remain in the participant's medical chart at the physician's office. To develop an information document outlining the community ownership of the database. To develop a confidentiality agreement for HOOD staff and data collectors. To safeguard the database from any computer network accessibility. To enforce the Freedom of Information and Protection of Privacy Act. RESULTS: Information regarding confidentiality was distributed to Primary Care Physicians offices, HIV Specialty clinics and AIDS Services Organizations in Ontario. Staff addressed participants' concerns regarding confidentiality. Awareness within the community about HOOD's commitment to secure confidentiality improved enrolment. Requests from prospective participants interested in enroling in the HOOD escalated. The enrolment rate in the HOOD was significantly increased. Currently the project is very successful and enrolment continues to expand throughout the Province of Ontario, Canada. LESSONS LEARNED: Complex issues relating to confidentiality when enroling prospective participants in a database were realized. The process designed to produce voluntary confidential enrolment in the HOOD has produced valuable knowledge and experience. Consultation with the community was crucial in this process for the success of the project.

MEETING ABSTRACTS Acquired Immunodeficiency Syndrome/EPIDEMIOLOGY/*PSYCHOLOGY *Confidentiality *Databases, Factual Human HIV Infections/EPIDEMIOLOGY/*PSYCHOLOGY *Medical Records Systems, Computerized Physicians, Family Specialties, Medical


Information in this article was accurate in December 30, 1998. The state of the art may have changed since the publication date. This material is designed to support, not replace, the relationship that exists between you and your doctor. Always discuss treatment options with a doctor who specializes in treating HIV.