Revisiting privacy and consent, and making changes along the way

Lori Hale, Executive Lead, Research and Policy

We first took on the issue of Ontario’s privacy and consent rules for caregivers in our 2017 report–Making Privacy and Consent Rules Work For Family Caregivers–after hearing repeatedly that privacy and consent is a barrier faced by many of Ontario’s family caregivers, and is too often used as a crutch for the lack of engagement with family caregivers.

After the launch of the report, The Change Foundation did what we always do, we found ways to package the information in a variety of ways, each targeted at various audiences. We hosted four webinars, we created two audience-specific knowledge products (one targeted at caregivers and one targeted at providers), and we created a variety of social media-specific infographics.

We’ve been pleased to see the response. Since our report launched, it’s been clear that we’ve hit a nerve and are filling an information gap for Ontario’s family caregivers and the providers who interact with them.

During this time, the Embrace Changing CARE team identified the need for a more specific product tailored to the questions that would help both caregivers and healthcare providers working within Ontario’s mental health and addictions system. The reality is that the mental health and addiction care system is different from other parts of the system, and operates under different legislation. In addition, the nature of these illnesses creates different challenges and barriers for family members.

Since then, we’ve been working closely with the Embrace team to create Questions & Answers On Patient Privacy and Consent in The Addiction and Mental Health System in Ontario, a Q&A-style document to respond to many of the specific questions that both the Embrace and The Change Foundation’s teams have heard. The resource provides suggestions and guidance for both family caregivers and health care providers. We greatly appreciate the leadership of the Embrace team in identifying and filling this gap for mental health and addiction caregivers.

The document answers questions related to age for patient consent, the timeframe, expiration and withdrawal of consent, as well as questions related to patient capacity to consent, a healthcare provider’s obligation to disclose and document, and the appointment of a substitute decision-maker.

The goal, not unlike the overarching goal of Changing CARE, is to help family caregivers and health providers understand Ontario’s patient privacy and consent legislation and promote closer collaboration for the benefit of patients, and to support caregivers in their role.

What we learned:

  1. There is an overwhelming need throughout Ontario for widespread education around health care privacy and consent rules—and there is an interest.
  2. These tools highlight and emphasize the importance of including and embracing family caregivers in every step of a patient’s care journey.
  3. The creation of this new resource underscores the Foundation’s belief in being nimble and adapting our thinking and resources to improve the caregiver experience across the Ontario healthcare system.

As we continue moving forward in Changing CARE, we are committed to listening and learning from family caregivers and providers, as well as our project teams—identifying gaps along the way and working together to connect them for an overall improved caregiver, provider and patient experience.

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