Best Practices for Gathering Informed Consent

Office of the Saskatchewan Information and Privacy Commissioner. Best Practices for Gathering Informed Consent and the Content of Consent Forms. Effective January 2018. 2 Best Practices for Gathering Informed Consent Section 18 of the FOIP Regulations, section 11 of the LA FOIP Regulation and section 6 of HIPA indicates that a consent to the collection, use or disclosure of personal health information is informed if the individual who gives the consent is provided with the information that a reasonable person in the same circumstances would require in order to make a decision about the collection, use or disclosure of personal health information. The following are best practices for gathering informed consent from individuals for the collection, use and/or disclosure of PI or PHI: 1. Ensure individuals know why their PI or PHI is being collected. To be informed, the explanations given to individuals should be clear and complete. Stating that the information is being collected for ‘research purposes’ or ‘to process a claim’ would be too vague and not specific enough. 2. Ensure individuals know how their PI or PHI will be used. Individuals should be fully informed of all the ways the organization intends to use their PI or PHI. Incomplete and vague explanations leave individuals without the proper knowledge to consent. In addition, long written explanations (more than 1 page) that use highly technical language make it less likely that individuals will read it or understand it. Make it ‘user friendly.’ Consider providing information, brochures or fact sheets that can be taken home by individuals that outline the potential purposes of collection and uses of the information. 3. Ensure that individuals know that they have the right to refuse or revoke their consent. Consent from individuals must be given freely and without threat or coercion. The threat of not receiving a necessary service, if consent is not given, interferes with an individual’s right to refuse or revoke their consent. Employees should be aware of when consent is required to deliver a service so they can properly inform individuals of the consequences of not providing consent. Some services can still be provided without the full collection and use of PI or PHI. Employees require clarity on what is essential and what is not. Consider developing policies and procedures to guide employees in this regard. 4. Ensure your organization has clear policies and procedures regarding the collection, use or disclosure of PI and PHI with appropriate enforcement policies that coincide.

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