Data Disclosure/Transfer Considerations
Agreements that outline the requirements for data transfer are required by AHS any time that health information where AHS is the custodian is being disclosed to a researcher (including data being disclosed as part of a data disclosure agreement [DDA]) and/or transferred to a third party. A number of agreements for data transfer can fulfill this need (i.e. a Clinical Trial Agreement (CTA), a sub-site agreement or a Data Transfer Agreement (DTA)).
Data Transfer Agreement (DTA): An inter-institutional or intra-institutional agreement to send data according to certain terms and conditions. DTA id
entify the parameters which govern the collection, transmission, storage, security, analysis, re-use, archiving, and destruction of data. A DTA should be developed in situations where the researcher has legal or ethical obligations, or where a real risk exists if the data is inappropriately accessed or used. Non-academic research activities (e.g., departmental/institution reporting, quality assurance, health services research, program evaluation) might also present the possibility of high risks of privacy or security breach and may require a DTA. The DTA binds the recipient party to Alberta Health Services. The sending party is not bound in the DTA but may be bound to their own responsibilities as part of a Data Disclosure Agreement (DDA).
Data Disclosure Agreement (DDA): An agreement between AHS and the principal investigator requesting personal health information from the data custodian (AHS). The agreement is signed to fulfill requirements set out as part of the Health Information Act (HIA).
| A Data Transfer Agreement (DTA) is NOT required when… | A Data Transfer Agreement (DTA) is required when… |
| Data transfer for your research is outlined in a Clinical Trial Agreement (CTA) or sub-site agreement | Data transfer for your research is not outlined in an existing formal agreement (i.e. a Clinical Trial Agreement (CTA) or sub-site agreement) |
| OR | AND |
| The health information that is being transferred is de-identified in accordance with the AHS De--identification Standard | The health information that is being transferred contains personal identifiers (see examples below) in accordance with the AHS De-identification Standard |
| A Data Disclosure Agreement (DDA) is NOT required when… | A Data Disclosure Agreement (DDA) is required when… |
| Data disclosure for your research is outlined in a Clinical Trial Agreement (CTA) or sub-site agreement (where AHS is a signatory and HIA language is included) | Data disclosure for your research is not outlined in an existing formal agreement (i.e. a Clinical Trial Agreement (CTA) or sub-site agreement) |
| OR | AND |
| The health information that is being requested is de-identified in accordance with the AHS De-identification Standard | The health information that is being transferred contains personal identifiers (see examples below) in accordance with the AHS De-identification Standard |
QUICK TIPS AND STRATEGIES FOR DATA DISCLOSURES/TRANSFERS
- If personal health information/data is de-identified, a DTA/DDA is not required and a few simple adjustments to remove identifiers can save time. If transfer of personal health identifiers is required for the study, a justification for each identifiable data element will likely be requested.
- Some quick tips for de-identifying the most commonly requested identifiers before transfer include:
- A full birthdate is commonly but rarely needed in its identifying form. Ways to de-identify a birthdate include:
- Truncating to Month-Year
- Calculating the actual age of the participant
- Using a date-shift feature in electronic data capture applications such as REDCAP (export features that uses an algorithm to retain overall values but shifts dates)
- Admission, discharge and major procedure/surgery dates (i.e. date of transplant may be particularly identifying)
- Truncation is recommended
- Date of death is one of the most identifiable elements
- Calculate age at death
- Truncation to month or the 1st or 15th of the month
- *Note* this element is one of the most difficult to find in repositories
The AHS Health System Access team works with many administration partners to draft and execute Data Disclosure and Transfer Agreements. Please contact Research.Administration@ahs.ca to inquire about your data transfer request.
