Citation

Noonan VK, Thorogood NP, Joshi PB, Fehlings MG, Craven BC, Linassi G, Fourney DR, Kwon BK, Bailey CS, Tsai EC, Drew BM, Ahn H, Tsui D, Dvorak MF. Healthc. Policy 2013; 8(4): 87-99.

Vernacular Title

Satisfaire les exigences en matière de confidentialité pour la création d'un registre multicentrique de patients: le Registre Rick Hansen sur les lésions médullaires.

Affiliation

Director of Research, Rick Hansen Institute, Vancouver, BC.

Copyright

(Copyright © 2013, Longwoods Publishing)

DOI

unavailable

PMID

23968640

Abstract

Privacy legislation addresses concerns regarding the privacy of personal information; however, its interpretation by research ethics boards has resulted in significant challenges to the collection, management, use and disclosure of personal health information for multi-centre research studies. This paper describes the strategy used to develop the national Rick Hansen Spinal Cord Injury Registry (RHSCIR) in accordance with privacy statutes and benchmarked against best practices. An analysis of the regional and national privacy legislation was conducted to determine the requirements for each of the 31 local RHSCIR sites and the national RHSCIR office. A national privacy and security framework was created for RHSCIR that includes a governance structure, standard operating procedures, training processes, physical and technical security and privacy impact assessments. The framework meets a high-water mark in ensuring privacy and security of personal health information nationally and may assist in the development of other national or international research initiatives.

Language: en