How do I manage individual participant data, or data with other privacy restrictions?

Rules on collecting data.

Rules on collecting data

A best practice for publishing data is to make it “as open as possible and as closed as necessary” because not all data may be publicly released.

Data that contain potentially identifying information will need to be modified prior to sharing these data with the public. While it is important that these modifications are made in order to protect confidentiality, or for other relevant reasons, these modifications may affect the data to the point where reproducibility or additional subsequent research by others is no longer possible.

Best practice: Save multiple versions of the data: one that is suitable for public release, and one that is suitable for further research but that is available on a highly restricted basis.

Research data can be subject to legal and ethical constraints which may limit how and when research can be published and data can be released to the public. Any research conducted involving human subjects must go through the review process of the University of Ottawa’s Research Ethics Board.

The Office of Research Ethics and Integrity has produced an internal guidelines document in order to help researchers navigate the REB process at the University of Ottawa. See Section 4 Anonymity, Confidentiality, and Privacy. These guidelines draw from the TCPS2.

Informed consent for the collection of data can include provisions for the sharing of that data

The Sensitive Data Toolkit, from the Sensitive Data Expert Group of the Portage Network, is meant to help researchers understand how research data are related to the research ethics process, and to advance research data management (RDM) practices, such as data sharing and deposit, in the context of existing research ethics frameworks. The three tools are intended to work together as a suite of resources, but can also be used individually.

Consent Form Templates are available from the Office of Research Ethics and Integrity to help researchers design their consent documents.

Guidance on sharing this data within your project team

Data collection and analysis

Best practice: It is not recommended that you collect individual participant data using Excel. Use Excel only for analysis of de-identified or anonymized data. It is recommended that you use software designed for the collection and management of sensitive information.

Consult your Faculty IT representative or University of Ottawa Scientific Computing (PDF, 551KB) services for available software options.

Best practice: Train your research team to work with this kind of data. Contact the University of Ottawa INSPIRE laboratory for consultation services and training on data anonymization or de-identification, and developing workflows for handling individual participant data in your research team.

Storage and back-up

Best practice: Participant data should be password protected and stored with encryption on a secure server with role-based rights.

Consult your Faculty IT representative or University of Ottawa Scientific Computing (PDF, 551KB) services for available secure storage and encryption options.

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