MCHP Data Access Process - Step 10 - Data Use and Output Guidelines
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Overview

  • All studies using data from the Manitoba Population Research Data Repository must follow the guidelines and requirements described below to ensure confidentiality, privacy and consistency with the approved study protocol.
  • The Principal Investigator (PI)/Student who has signed a Researcher Agreement/Student Researcher Agreement is responsible for ensuring the obligations outlined in the approvals and agreements are followed by all project team members.
  • MCHP has specific guidelines and requirements for output (e.g.: publications and presentations) related to research projects using data from the Repository, as requested from our data providers and approving agencies. These are described below.

Terminology and Definitions

  • "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 the 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 Families and Manitoba Education 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 data used in the study producing the output (e.g., Health Information Privacy Committee for Manitoba Health data).
  • "Output" ** - refers to material generated from the Data Repository subject to rules of disclosure.  This material includes:
    • manuscripts for publication (including thesis publications) or other printed media;
    • posters and abstracts;
    • oral presentations; 
    • printed materials distributed at educational or professional conferences or seminars; and
    • website postings of project related 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 for every individual presentation.)

Guidelines and Requirements

All output prepared from data in the MCHP Data Repository for public release (this does not apply to material presented or circulated internally to authorized project team members) must adhere to the following guidelines:

  1. Submission of Output Notification and Approval
  2. Suppression of Small Data Values
  3. Inclusion of Required Acknowledgements and Disclaimers
  4. Submission of data underlying findings in manuscripts to a public repository
1. Output Notification and Approval Process
  • For Manitoba Health, Seniors and Active Living (MHSAL) Data

    Output for public release produced using MHSAL data must be handled in the following way:

    • 30 days prior to release for publications "in learned journals or thesis presentation" and 30 days prior to release for conference/meeting presentations and for abstracts, the output must be sent to:
      1. Manitoba Health, Seniors and Active Living (MHSAL) - for review regarding confidentiality, privacy and consistency with the HIPC-approved protocol. The letter (or e-mail) should include the following clause:
        • Enclosed is a manuscript, which has recently been completed, titled [title of manuscript]. I would appreciate it if you would review this paper with regard to the confidentiality of personal health information. I would also welcome any other critique that you might have in regards to the use of the health data in this paper.
      2. MCHP - attention of the MCHP Repository Access Unit (RAU)
    • Prior notice of media release - please inform Jennifer_Pepneck@cpe.umanitoba.ca of upcoming media releases.
    • Following publication, the PI must send a copy of the publication to MHSAL in pdf form.

      If the dissemination of output will be entirely verbal (no publication of abstract or proceedings), no formal submission for approval to MHSAL is required.

  • For non-Manitoba Health, Seniors and Active Living (non-MHSAL) Data

    Output produced using non-MHSAL data has the following requirements:

    • 30 days prior to public release, the data provider(s) must be notified of the planned release. MCHP will provide you with the contact information for the non-MHSAL data providers.
    • Following publication, the PI must send a copy of the publication / presentation to the data provider.

    Prior to public release, a letter of acknowledgment/approval must first be obtained from HIPC and non-MHSAL data providers. 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.

  • For Private / Industry Sponsored Research Projects

    The following output requirements relate to private / industry sponsored research projects:

    • The Principal Investigator will provide the sponsor with a final research report, if outlined in the funding contract / proposal, sixty (60) days prior to public release. No preliminary outcomes or information will be provided to the sponsor or their representative prior to the final research report being available.
    • The Principal Investigator will provide all of the data providers an opportunity for a verbal presentation regarding the project findings and conclusions, and content of all reports or manuscripts, at least sixty (60) days in advance of the public release of such reports or manuscripts.
    • The Sponsor will not have the opportunity to influence the data analysis or interpretation, study conclusion or content of any reports or manuscripts.
2. Suppression of Small Data Values
  • All output for public release must ensure that the data are aggregate, and summarized in such a way that any cell or record value represents at least 6 or more individuals or events. A value of zero is also acceptable. 
  • Additionally, it must be ensured that the suppressed information cannot be obtained by other calculations (e.g., totals from which the cell N can be inferred).
  • The following information is available from MCHP upon request:
    • 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
3. Acknowledgements and Disclaimers

There are a number of acknowledgements and disclaimers that should be reviewed to see if they need to be included in your publication / presentation. This includes information on copyright, referencing SAS, use of Adjusted Clinical Groups (ACG), use of Canada Census data, and a statement on Traditional Territories.. For more information, please read our Acknowledgments and Disclaimers web page.

The following standard statement must be used in 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 <names of other data providers>.

NOTE:  The names of data providers can be found in the Manitoba Population Research Data Repository Data List.

The statement above should be substituted with the following statement in all publications that have received Private Sector / Industry Sponsorship:

We acknowledge the financial support of <Name of the Sponsor>. 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, University of Manitoba, other data providers, and the <Name of the Sponsor> 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 <names of other data providers>.

4. Submission of Data Underlying Findings in Manuscripts to a Public Repository
  • Many journals now 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>.

Tasks

The required tasks include:

  • Output Notification - MHSAL and MCHP - provide MHSAL and MCHP with notice, within the appropriate time frame (e.g. 30 days prior to), of your plan to publish or present output from your study.
  • Output Notification - Non-MHSAL Data Providers - provide non-MHSAL data providers with notice, within the appropriate time frame (e.g. 30 days prior to), of your plan to publish or present output from your study.  MCHP will facilitate this process.
  • Output Approval - MHSAL and Non-MHSAL Data Providers will provide a letter of acknowledgement/approval for the release of output from your research project.
  • Media Release Notification (if applicable) - please inform Jennifer_Pepneck@cpe.umanitoba.ca of upcoming media releases related to your research project.
  • Send copy of Output to MHSAL and non-MHSAL Data Providers - following publication, send a copy of the publication to MHSAL and the non-MHSAL Data Providers;
  • Adhere to the General Data Use and Output Guidelines outlined on this web page, and more specifically to:
    • Suppress data values less than 6; zero values are acceptable.
    • Use appropriate acknowledgements and disclaimers.
  • Use of Data Availability Statement - if required, providing a "data availability statement" to journals now requesting source data from your project. You may still be required to submit statistical or aggregate data that is not in the publication.

More Information

Next Step

The next step in the MCHP Data Access Process is Step 11 - Project Closure.


Page Last Updated: March 3, 2020