[Usefulness of a vaccination registry and the management of consent: the case of Quebec]. / L'utilité d'un registre de vaccination provincial et la gestion du consentement: le cas du Québec.

ABSTRACT

CONTEXT The Quebec Public Health Act provides for the creation of a central vaccination registry. However, details of how such a registry would be used have not been established. This study seeks to document the opinion of both the public and of health workers about the usefulness of the registry, consent for enrolment, access to the data and the right of withdrawal. METHODS: Individual interviews and discussion groups were held with parents, senior citizens and health workers. The material collected was recorded, transcribed and analyzed qualitatively using MAXQDA software. RESULTS: The usefulness of a vaccination registry seems to meet with general agreement, as does the idea of obtaining broad-based consent at enrolment. However, this consensus starts to crumble on questions of determining the rules governing access to the registry. Some favour limited consent, authorizing each access, while others, more numerous, prefer a broad-based consent giving access to all individuals authorized under the law. Opinions are even more divided on the question of giving the user the right to not record certain vaccines, particularly when they may be considered sensitive and a possible cause of prejudice. DISCUSSION: The more the information is considered sensitive by users, the more they seek to have access to the register and entries into it controlled and to apply some kind of specific consent, limited in scope, rather than a broad-based consent. This study lets us draw lessons applicable to the computerization and networking of medical records.