How does Ongoing Data in the Repository come to MCHP? Acquisition, Installation, Cleaning, & Validation Ongoing Databases in MCHP Repository Cost: Average $80,000 initial, ongoing $5,000 Steps: Commitment, Data Sharing Agreements, Initial Request Request, Preparation of Data Transfer, De-Identification Validation Usage Documentation Ongoing support & maintenance How do data get into the Repository and what is done to the data as part of the installation process? Initial request for new data source. MCHP sends a formal request to the data provider to share the data. A Data Sharing Agreement (DSA) is drawn up. The agreement spells out the terms under which the data may be accessed, used, and disclosed. Data need to be identified as ongoing or project specific – project specific data can only be accessed by the identified project, while ongoing data become part of the repository. This does not change the approval process for using the data. Project specific data will not be identified as part of the repository database list. Preparation of new data source by data provider. Once a DSA is in place, a recommended list of tables and fields is prepared by MCHP for the data provider who then assigns resources to prepare the data. We negotiate with the data provider as to what kind of information will be provided in the data. Transfer (De-Identification). All demographic/sensitive fields are removed from the requested database and a scrambled Personal Health Identifier (PHIN) is added to permit linkage to other databases in the MCHP repository. All databases are stored unlinked at MCHP. Manitoba Health – strips PHIN, names, addresses, and other sensitive fields, then adds a scrambled PHIN prior to sending the database to MCHP. Non-Manitoba Health data provider – sends a demographic subset of the database to MH, who will use the information to add scrambled PHIN. The data provider also sends an initial version of the de-identified data to MCHP to permit advance testing prior to receiving the final version once MH has added a scrambled PHIN. Repository Installation. Once the database is installed, it is always converted to SAS, and then enhanced and documented at MCHP to make it available as part of the MCHP Data Repository. 4. Cost –The initial cost for the Centre to ensure all of this occurs averages out to $80,000, but could be as low as $5,000 or as high as $300,000. Each database costs $5000 per year to maintain. Applying for Access

Non-Health Data Provider Identifying Information (e.g. Name, Address, etc) Mark Mark ID 4732 ID 4732 ID 4732 1001000111001 1001000111001 Internal Reference # (Scrambled Case ID) Program Data Scrambled PHIN Manitoba Health MCHP Finds real PHIN, strips off identifying information, scrambles PHIN Files are stored separately and can only be linked for approved research purposes 890 890 890 Many providers encrypt/scramble their internal reference number This depends a little on the system, who can access the backend, and provider comfort level. In this context, Manitoba Health represents Health Information Management (HIM) This diagram shows the de-identification process when bringing in data for a specific project, or to be part of the Repository. Transferring of the data to MCHP goes through a blind process: MCHP receives the program data for non-health data but never individual identifiers MH receives the identifiers but not the program data. MH attaches an encrypted PHIN and strips the data of all identifying information before sending it to MCHP. We are then able to link the Record ID from the Program Data with the encrypted PHIN provided by MH. The data are then available, with appropriate approvals in place, on a project by project basis. Users with access to the de-identified MCHP data and original source data will not attempt to identify corresponding records or individuals between the original source data and the de-identified MCHP data. ID 4732 Sends this crosswalk file to MCHP