title: Meeting the privacy requirements for the development of a multi-centre patient registry in Canada: the Rick Hansen Spinal Cord Injury Registry.
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.
authors: Director of Research, Rick Hansen Institute, Vancouver, BC.
authors: Vanessa K
authors: VK
authors: Noonan
authors: Nancy P
authors: NP
authors: Thorogood
authors: Phalgun B
authors: PB
authors: Joshi
authors: Michael G
authors: MG
authors: Fehlings
authors: B Catharine
authors: BC
authors: Craven
authors: Gary
authors: G
authors: Linassi
authors: Daryl R
authors: DR
authors: Fourney
authors: Brian K
authors: BK
authors: Kwon
authors: Christopher S
authors: CS
authors: Bailey
authors: Eve C
authors: EC
authors: Tsai
authors: Brian M
authors: BM
authors: Drew
authors: Henry
authors: H
authors: Ahn
authors: Deborah
authors: D
authors: Tsui
authors: Marcel F
authors: MF
authors: Dvorak
mesh_terms: D015982:Bias; D002170:Canada / Q000453:epidemiology; D016494:Computer Security; D003219:Confidentiality; D006291:Health Policy; D006801:Humans; D007258:Informed Consent; D012042:Registries / Q000592:standards; D013119:Spinal Cord Injuries / Q000453:epidemiology*
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