Lori Hale, Executive Lead, Research and Policy
When The Change Foundation embarked on our engagement with family caregivers and health and community care providers in 2015, our goal was to better understand the caregiver experience — particularly in their interactions with providers.
We heard from both caregivers and providers that privacy and consent requirements were a real challenge, and that privacy and consent legislation was often used as a reason for not sharing patient information with the family caregiver:
- Family caregivers told us that providers often claimed that they couldn’t share health information for privacy reasons.
- Providers told us they were uncertain about privacy and consent requirements, and what they could and couldn’t share with caregivers.
It was clear that caregivers and providers would benefit from a resource that would address myths and realities of privacy and consent. Our document supports a better understanding of the consent and privacy requirements set out in the Personal Health Information Protection Act, 2004 and the Health Care Consent Act, 1996.
We know that providers want to work effectively with family caregivers, and with a clearer understanding of the consent and privacy rules, providers and caregivers can work together to optimize care and support for patients.
I worked closely on the resulting report with a leader in this field, Mary Jane Dykeman of Dykeman and O’Brien Health Law, who provided the legal expertise and the initial drafts on which the subsequent report — Making Privacy and Consent Rules Work for Family Caregivers — is based. I also had the opportunity to work with nine family caregivers who reviewed and provided important insights on early versions of this resource.
Before finalizing and releasing the report, we tested the resource with groups of family caregivers and providers. This included offering webinars for our Changing CARE partners, where we invited interested family caregivers and health care providers to join. Hosting these webinars in different parts of the province and in different treatment settings created a rich conversation and a chance to talk about shared solutions and strategies.
Some themes echoed across the webinars—among them, the frustration of caregivers who have helpful information to share about the patient. By contrast, some health care providers have what was referred to as privacy paralysis – some basic knowledge of privacy rules, but uncertainty about how much information they could collect from caregivers, or how much information they could give them.
These challenges, as Mary Jane pointed out in the webinars, are affected, in part, because the privacy landscape has shifted over the years. The added significant sanctions and disciplinary action for privacy breaches, which have been well covered by the media, as well as increased oversight by health regulatory colleges, has clearly increased the caution by providers in sharing health information.
The Change Foundation’s resource aims to create common rules and sensible discussion. It is our hope that a more nuanced conversation around privacy and consent will lead to caregivers being able to both share and receive valuable information to support the patient.
Similarly, it is our hope that health care providers feel more confident in how and what they share, with the consent of the patient (or the patient’s substitute decision-maker). The resource also creates a primer on health care consent since some family caregivers ultimately become the patient’s substitute decision-maker, giving them even greater authority to give and receive information about the patient.
Our report includes some case examples to help illustrate how the legislation plays out in various scenarios, as well as links to additional resources. We hope that family caregivers and providers alike will find the resource insightful and practical.