The Alberta Perinatal Health Program (APHP) Information Management and Research core business function is to: Collaborate with Health Regions, Health Professionals, Alberta Health & Wellness, & Other Stakeholders on Activities to Monitor & Assess the Health Status of Mothers & Infants in Alberta

Activities

The activities of the Information Management and Research function are guided by a multidisciplinary standing committee [pdf]. The overall mandate of the committee is to assist with analysis, interpretation and use of perinatal health data and to make recommendations regarding reporting of the data. Three working groups are responsible for;

1. Managing data requests and data process management
2. Producing a provincial perinatal report
3. Defining data elements for the expanded data repository

The APHP implemented the provincial perinatal data repository, PeriLinkAB, in April 2008.  A standards based approach was used for development of the repository, including industry standard software and adoption of existing perinatal data standards. Legacy data from three individual databases was migrated to the repository which currently houses data from 1992 to present.

Collection and Use of Perinatal Data

The APHP collects perinatal data from the provincial delivery record (Part 1 and Part 2) for all hospital births and Registered Midwife attended home births in the province. A Privacy Impact Assessment was accepted by the Alberta Office of the Information and Privacy Commissioner in April 2008.  The APHP approach to collection use and disclosure of data is outlined in the APHP data management guidelines.

Data are used to shape strategies to optimize infant and maternal outcomes and to support the study of perinatal mortality. Interpretation of data is used to identify educational needs related to improvement of clinical care, for monitoring of selected clinical practices as well as analysis and interpretation related to health services and population health. The APHP supports the use of data in its custody for research.

Data Requests

Any facility or individual interested in perinatal health may request data from the APHP database. Requests can be made for use of the data through the established request and approval process.  Requests for aggregate information should be made using the "Aggregate Data Request Form" [ pdf  | html ]. 

Requests for access of the data for research purposes should be made using the following guidelines:

1. All requests for APHP data must be made in writing. A research data request form [ pdf | html ], a research proposal (including rationales for data elements requested) and an ethics application form/approval are required for review. Requesters should be prepared to describe the variables required, the type of data file needed, data linkage needs and other details of the project when making a request
2. The APHP reserves the right to deny a request if it is deemed inappropriate, or in violation of the Alberta Privacy Legislation or/and the APHP Information Management Guidelines.
3. The time for completion for data requests depends on the project timeline and the APHP work load; decisions on the cost recovery fees for data extract preparation are based on the APHP standard fee schedule.
4. Evidence of approval by a recognized research ethics board is required by APHP before data is released.

An abridged version of our APHP data elements and defintions is available.

An annual provincial report is produced to identify regional trends, prevalence of risk factors, allow for inter-hospital comparisons and benchmarking. Ad hoc and special purpose reports are produced upon request of a region or facility or to address specific issues that have been identified by the perinatal community.

Goals

The goal for the information management and research function within the APHP is to

• Use data to support knowledge transfer through influencing and supporting planning and policy making at front-line, professional and regional levels.
• Influence provincial and national entities towards defining common data standards and accurate reporting

Which will ultimately lead to improved RHA capacity in data and information management in support of optimal care for mothers and infants in Alberta.