All studies using the data housed at the Manitoba Centre for Health Policy (MCHP) must follow the procedures described below to ensure confidentiality, privacy and consistency with the approved study protocol. The PI who has signed a Researcher Agreement is responsible for ensuring the obligations outlined in this agreement are followed by all team members.
- "Use" - refers to the development of analytic results and creation of temporary data analytic files related to data approved for access for the study. Use is limited to: 1) the approved study objectives and 2) those study members with appropriate approvals and permission.
- "Disclosure"/"Release" - refers to the transfer of results or information that has been generated using data from the MCHP Data Repository out of the secure MCHP environment. This includes release of information or output for public dissemination, in either hard copy or electronic form. Dissemination of such information is governed by organizations such as the following:
- Government legislation
- Health data - Information Sharing and Protection of Privacy Agreement under the Personal Health Information Act (PHIA)
- non-Health data such as Manitoba Family Services/Housing and Manitoba Education, Training and Youth Data under the Freedom of Information and Protection of Privacy Act (FIPPA)
- University of Manitoba/Manitoba Centre for Health Policy policies and procedures
- Data providers for the databases used in the study producing the output (e.g., Health Information Privacy Committee for Manitoba Health data).
- "Output"* - refers to material generated from the MCHP Data Repository subject to rules of disclosure; this material includes:
- manuscripts for publication (including thesis publications) or other printed media
- posters, abstracts
- oral presentations
- distribution of printed materials at educational or professional conferences or seminars or website postings of such material
* Where output has been approved by Manitoba Health and other providers, its inclusion in multiple presentations does not require additional approvals for each subsequent presentation. However, Manitoba Health and other data providers should still be notified regarding each presentation. (When multiple presentations of content are likely to occur, it is suggested that a deck of slides be compiled for initial review by Manitoba Health to avoid the need for submitting content for approval with each presentation.)
All output prepared from databases in the MCHP Data Repository for public release must ensure the following. (This does not apply to material presented or circulated internally to authorized project team members.)
- Suppression of small data values
- Inclusion of required acknowledgements and disclaimers
- Submission for approval before being cleared for release
- Submission of data underlying findings in manuscripts to a public repository
1. SUPPRESSION OF SMALL DATA VALUES
All output for public release must ensure that the data are aggregate, and summarized such that any cell or record represents at least 6 individuals or events. In addition, it must be ensured that the suppressed information is not obtainable by other calculations (e.g., totals from which the cell N can be inferred). The following additional information is available internally:
- Policy - Suppression of small data values
- Examples and illustrations - How to handle small sample size and cell suppression
- Suppression strategies - April 14, 2010 programmers meeting notes
2. ACKNOWLEDGEMENTS AND DISCLAIMERS
The following standard statement should be used on all publications:
The authors acknowledge the Manitoba Centre for Health Policy for use of data contained in the Manitoba Population Research Data Repository under project #___ (HIPC#___). The results and conclusions are those of the authors and no official endorsement by the Manitoba Centre for Health Policy, Manitoba Health, or other data providers is intended or should be inferred. Data used in this study are from the Manitoba Population Research Data Repository housed at the Manitoba Centre for Health Policy, University of Manitoba and were derived from data provided by Manitoba Health and <name other data providers>.
(Note: data provider information is included in the MCHP List of Databases.)
Additional information (e.g., referencing SAS, ACG, census) is available at Acknowledgments and Disclaimers.
3. OUTPUT APPROVAL PROCESS
a) Health data
Output for public release produced using Manitoba Health data must be handled in the following way:
If the dissemination of output will be entirely verbal (no publication of abstract or proceedings), no formal submission for approval to HIPC is required.
b) Non-Health data
Output produced using non-health data such as Manitoba Family Services/Housing Data and Manitoba Education, Training and Youth Data requires:
3 months prior to public release: The PI should discuss planned dissemination of results with MCHP Director.
30 days prior to public release: The data provider must be notified of the planned release. MCHP will facilitate this process.
Following publication: The PI must send a copy to the data provider.
Prior to public release, a letter of acknowledgment/approval must first be obtained. (If pre-released materials are approved for limited distribution they should be clearly stamped PRELIMINARY - NOT FOR FURTHER DISTRIBUTION (they should not be stamped Confidential).)
4. SUBMISSION OF DATA UNDERLYING FINDINGS IN MANUSCRIPTS TO A PUBLIC REPOSITORY
Many journals require that source data used in analysis for articles be submitted to a publicly accessible repository (e.g. PLOS Journals http://journals.plos.org/plosone/s/data-availability). This is not possible for most analysis done at MCHP as disclosure of any portion of the MCHP Repository for use/access outside of MCHP is not permitted. An example of a data availability statement (see below), provides a response to journals requesting source data from the MCHP Repository. Journals may still require submission of statistical or aggregate data not in the publication; they will provide recommended sites and processes for submission.
The University of Manitoba's UM Dataverse (https://libguides.lib.umanitoba.ca/facultyhelp/dataverse) is a suitable open source repository for the management and dissemination of research data. Please contact the University of Manitoba Libraries Research Services Team for more information: (https://libguides.lib.umanitoba.ca/researchservices/datamanagement).
- Example of Data Availability Statement:
Data used in this article was derived from administrative health and social data as a secondary use. The data was provided under specific data sharing agreements only for approved use at Manitoba Centre for Health Policy (MCHP). The original source data is not owned by the researchers or MCHP and as such cannot be provided to a public repository. The original data source and approval for use has been noted in the acknowledgments of the article. Where necessary, source data specific to this article or project may be reviewed at MCHP with the consent of the original data providers, along with the required privacy and ethical review bodies. Statistical and anonymous aggregate data associated with this paper, along with metadata describing the original source, has been submitted to <site repository, DOI and accession number>.
Last updated January 24, 2019