Health research data access

Health data for research

The Ministry of Health is the custodian of extensive, but not exhaustive, administrative data and information about the health system in Alberta. Researchers may request data to support research, planning, policy development, and quality improvement projects.

Online health information

Aggregate health data available without request:

• Interactive Health Data Application – information on health status and determinants of health in both table and geographic map formats
• Open Government – publically available datasets and publications

Requests for data

There are 3 types of requests for administrative health data –

Research requests with research ethics board approval

Submit your request to [email protected] with the:

• completed Request Application form
• study protocol
• ethics documents – submission and approvals from a Research Ethics Board in Alberta
• required data sets and common data elements if known (new version coming soon)

Information requests for planning, policy development, and quality improvement

Submit your request to [email protected] with the:

• completed Request Application form
• project documentation, including purpose
• required data sets and common data elements if known

Internal requests and general inquiries

Submit your request to [email protected]

Resources

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• Health Information Act and Regulations
• HIA Guidelines and Practices Manual
• Overview of Administrative Health Datasets
• Commonly Requested Data Elements
• Schedule of Medical Benefits Current and Historical Codes and Descriptions
• Physician Specialty Codes and Standard Grouping
• Cohort Template

Data assets

A number of linkable administrative datasets are available to support research and information requests. The Overview of Administrative Health Datasets provides details of these datasets:

• Alberta Blue Cross Claims, from 1994 – data primarily on seniors and their dependents
• Alberta Continuing Care Information System (ACCIS) from 2010 – includes long-term care and community care; community care dataset is currently incomplete.
• Ambulatory Care, from 1997 – includes emergency department visits and day procedures
• Inpatient, from 1993 – Discharge Abstract Database/hospital morbidity
• Longitudinal Demographic Profile, from 2000 – demographics, service utilization, chronic diseases, Clinical Risk Groupers (CRG), and costs
• Pharmaceutical Information Network (PIN) Dispenses, from 2008 – pharmacy dispenses (no financial information)
• Population Registry, from 1993 – basic demographic and geographic information
• Practitioner Claims, from 1994 – fee-for-service and shadow-billed claims
• Vital Statistics, Births, from 2005 – with authorization from Service Alberta
• Vital Statistics, Deaths, from 1999 – with authorization from Service Alberta

Additional datasets:

• Financial information related to health costing, from 2000, actual cost information related to medical services from limited facilities – primarily in Calgary and Edmonton. Groupers used to cost ambulatory and inpatient care.
• Diagnostic Imaging, from 2011, Alberta Health Services (AHS) delivered in-hospital diagnostic imaging (does not include images or results)
• Laboratory, limited lab systems reporting from 2009 – full from 2012, AHS data on commonly requested lab tests

The Commonly Requested Data Elements spreadsheet lists frequently requested data elements and their descriptions. Preliminary data specifications can be developed from this workbook that should be included in your request, along with the application form, to initiate the request.

Research request process

For a data request to be considered, the requested data must be available and the ministry will have received the following:

• all required documentation
• acceptance of the data specifications
• and the cohort if applicable

The research request process follows 5 primary steps from request receipt to data disclosure.

1. Receive and investigate

• Data Request Application form and attachments received at [email protected]
• acknowledgment sent to requester including the assigned request number
• application reviewed for completeness
• preliminary data specification drafted
• receive/investigate timeline dependent on the required documentation being provided

2. Plan

• data specifications and methodology refined
• preliminary analysis completed, if required
• data specifications approved
• cost estimate approved, if applicable
• cohort and data from other custodians received, if applicable
  • download the Cohort Template
• work is scheduled and timeframe estimate provided once request is qualified
• plan timeline is dependent on requester availability to address questions, the number of iterations required to finalize the data specifications, and the provision of cohort and external data

3. Execute

• analyst develops custom code to extract and organize data
• quality assurance review completed
• data are prepared for disclosure (i.e., anonymized)
• execute timeline is dependent on data availability, workload, time spent on cohort validation, and the complexity of the project

4. Package

• legal agreement prepared and executed
• data disclosed to requester using Secure File Transfer Protocol
• see the data disclosure guidelines for more information on disclosure
• package timeline is dependent on whether a standard agreement template is used, and the time required in obtaining signatures

5. Closure

• invoice is paid, if applicable
• staff available to respond to requester questions
• request remains accessible for future update and reuse requests

Cost estimate

The Ministry of Health completes requests on a partial cost-recovery basis. Rates for data extractions are:

• $1,600 per day (8 hours)
• $200 flat fee – re-use agreement administration charge

Alberta Health will provide a cost estimate after the data specifications are accepted. If required, a high-level cost range can be provided earlier based on the years of data, datasets requested, and size of cohort.

Costs are for analytical time only and exclude meetings, communications and run-time.

Changes to the data specifications by the requester after acceptance may result in additional time and/or cost.

Data extracts for Research Ethics Board approved research for Alberta universities are provided at no charge.

Timeframe for extract

The time it takes to complete the request depends on several factors, including the complexity of the request and resource capacity as described in the request process.

Several of the data sources are created on an annual basis only and are not available until several months after the end of the fiscal, March 31, or calendar year.

Information request process

Data extracts for approved information requests are provided at no charge. The same process listed for research requests is followed, but modified based on the type of request.

Compete the Data Request Application form and send it along with relevant documentation to [email protected].

Data disclosure

Research data disclosures require a contractual tripartite research agreement between the researcher, their affiliated organization – usually their university – and the Ministry of Health. The agreement outlines the restrictions on data retention and on the disclosure and use of information. Once the agreement has been fully executed, data are provided to the requester.

A letter indicating which section of the Health Information Act (HIA) the data is disclosed under, as well as any restrictions on use of the information, is sent to the requester.

The HIA distinguishes between types and uses of information.

Aggregate data

The HIA allows the disclosure of non-identifying health information for any purpose. Refer to Section 32(1) – Disclosure of Non-identifying Health Information.

Data for research

HIA Division 3 – Disclosure for Research Purposes – requires the researcher to submit a research proposal and receive approval from a recognized research ethics board, as listed in the regulations, before requesting data from one or more custodians, for example, Alberta Alberta Health Services.

Other HIA topics include the application, by researcher to a custodian, for disclosure of health information or to perform data matching, conditions and consents, and the need for an agreement between the custodian and the researcher for each research proposal.

If a requester intends to use the disclosed health information for data matching, they must first notify the Information and Privacy Commissioner, as per Section 32(2). The HIA defines data matching to mean the creation of individually identifying health information by combining individually-identifying or non-identifying health information or other information from two or more electronic databases, without the consent of the individuals who are the subject of the information.

Data for internal management purposes to other custodians

HIA Section 27 (1) – Use of Individually Identifying Health Information – allows for the disclosure of individually identifying health information for internal management purposes. It is used to disclose data to support planning, policy development and quality improvement projects.

Guiding principles for data disclosure under the HIA

The Ministry of Health must comply with HIA principles and may impose additional conditions on the researcher in addition to those listed by the Research Ethics Board.

Highest degree of anonymity

The highest degree of anonymity is for the persons who are the subject of the information.

Aggregate information is the most anonymous type of information. Non-identifying health information about groups of individuals with some common characteristic(s) ensures that the identity of an individual cannot be readily determined from the information.

Individually non-identifying information has identifiers removed so that the identity of the individual cannot be easily determined. Typical identifiers removed are:

• personal health number
• hospital chart number
• name
• address
• postal code
• date of birth

Where removing identifiers does not meet the research need, and given ethics approval, other techniques to protect the identity of the information may be used including:

• scrambling of identifiers – personal health number
• truncation – first three digits of postal code
• substitution – age instead of date of birth

Other attributes or combinations of attributes may be considered identifying, such as rare disease, geographical isolation, facility ID plus provider specialty.

Individually-identifying information has a higher level of protection. The disclosure of individually-identifying data may require individual consents.

Least amount of information

The least amount of information will be disclosed to meet the needs of the stated purpose.

When collecting, using or disclosing health information, a custodian must collect, use and disclose only the amount of health information that is essential to enable the requester to carry out the intended purpose.

Requesters need to clearly explain their need for the particular data elements requested.

Need to know

Need to know is the disclosure of only necessary information to carry out research or responsibilities.

Requesters need to explain how the data will be used and for what purposes.

Publications

• Environmental Public Health reports

Contact

For research ethics board-approved research requests, email: [email protected].

For general inquiries and health information requests, email: [email protected].