In 2015-16, we engaged with family caregivers, and health and community care providers across Ontario through our Caring Experience initiative, to understand the breadth and depth of caregiving in Ontario from both perspectives.
Family caregivers told us:
- They want more formal recognition of, and respect for, their caregiving role, and in some cases, they want to be part of a circle of care.
- They are concerned that they can’t access the information they need to support the person they are caring for.
- That providers often told them that they couldn’t share health information for privacy reasons.
We also engaged with health care providers to understand what got in the way of their efforts to work effectively with family caregivers. These providers told us:
- They were uncertain about privacy requirements.
- They were unclear whether they had the legal right to speak with caregivers to collect personal health information.
- They weren’t sure whether or when they are allowed to share personal health information with family caregivers.
It was clear that both caregivers and providers could benefit from a resource that would set the record straight about how Ontario’s privacy and consent rules apply to them. In this report, The Change Foundation set out to address these concerns by:
- Explaining the legal framework that applies to caregivers and providers under Ontario’s health privacy legislation—the Personal Health Information Protection Act, 2004 (PHIPA);
- Explaining the consent requirements outlined in the Health Care Consent Act, 1996 (HCCA);
- Summarizing what caregivers need to know about the legal frameworks in order to get the information they are entitled to in order to serve and support patients, as well as providers’ legal responsibilities about consent and disclosure; and
- Describing how some common scenarios play out under Ontario’s privacy and consent legislation.
Report and Related Resources
Questions & Answers on Patient Privacy and Consent in The Addiction and Mental Health System in Ontario (pdf)
Shortly after their project focused webinar in late Fall 2017, our Embrace Changing CARE team acknowledged the need for an additional knowledge product tailored specifically to the questions that would help both caregivers and health care providers working within Ontario’s mental health and addictions system.
Webinar: Making Privacy and Consent Rules Work for Family Caregivers Webinar – March 8th, 2018
*all questions received during the webinar have been answered either in the webinar recording or the slide deck available for download above*
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