The Caring Experience

Privacy and consent issues for caregivers and providers in Ontario

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.

Making Privacy and Consent Rules Work for Family Caregivers

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


Report: Making Privacy and Consent Rules Work for Family Caregivers (pdf)

Privacy and Consent for Caregivers: What Healthcare Providers Need to Know (pdf)

Privacy and Consent for Caregivers: What Family Caregivers Need to Know (pdf)

Making Privacy and Consent Rules Work for Family Caregivers – webinar slides (pdf)

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*

For more information, please contact:

Communications at

Stories Shared, Voices Heard: Ontario’s Family Caregivers

When we launched our strategic plan Out of the Shadows and Into the Circle, bringing a new focus to the role of family caregivers in the health care system, we wanted to listen and learn from family caregivers as well as frontline health care providers. To do that effectively, we created The Caring Experience project. The Caring Experience was instrumental in allowing The Change Foundation to better understand the experiences and interactions, as well as the common ground, between family caregivers and those working in Ontario’s health and community care sectors.

With the Ontario Caregiver Coalition, the Foundation met with nearly 300 caregivers across Ontario during The Caring Experience through various engagement methods including caregiver workshops, one-on-one interviews, and journey mapping activities. In addition, the Foundation also reached out to caregivers using short online surveys to broaden our reach provincially.

Stories Shared, Voices Heard: Ontario’s Family Caregivers is an in-depth report that captures what caregivers shared during The Caring Experience about their experiences and interactions with Ontario’s health and community care sectors. Most importantly, the report features key quotes directly from caregivers on what they want, need, and expect from the health and community care sectors to make their role easier. Appendices within the report provide an overview of the main engagement methods as well.

The Change Foundation believes this report provides unprecedented context on how caregivers experience Ontario’s health and community care sectors, providing a boon of insight for those working to improve the system. It also builds on the four major themes outlined in the Foundation’s Out of the Shadows and Into the Circle: From Listening and Learning to Action report.

Report and Related Resources


For more information, please contact:

Communications at

Stories Shared, Voices Heard: Ontario’s Healthcare Providers

When we launched our strategic plan Out of the Shadows and Into the Circle, bringing a new focus to the role of family caregivers in the health care system, we wanted to listen and learn from family caregivers as well as frontline health care providers. To do that effectively, we created The Caring Experience project. The Caring Experience was instrumental in allowing The Change Foundation to better understand the experiences and interactions, as well as the common ground, between family caregivers and those working in Ontario’s health and community care sectors.

The Foundation met with over 200 frontline health providers across Ontario during The Caring Experience through 25 different focus groups meetings across health care sectors. In addition, the Foundation also had over 200 reponses to an online survey to health providers.

Stories Shared, Voices Heard: Ontario’s Healthcare Providers is an in-depth report that captures what providers shared during The Caring Experience about their experiences and interactions with family caregivers and what they see as the major issues affecting this relationship. Most importantly, the report features key quotes directly from health providers on what they see as specific challenges in the health and community care systems and their thoughts on what an ideal health care future looks like for caregivers and providers. Appendices within the report provide an overview of the main engagement methods as well.

The Change Foundation believes this report provides important context on the specific concerns and challenges providers face while trying to work with and support Ontario’s family caregivers. It also builds on the four major themes outlined in the Foundation’s Out of the Shadows and Into the Circle: From Listening and Learning to Action report.

Report and Related Resources

For more information, please contact:

Communications at

Partnering with family caregivers essential to Changing CARE

Changing CARE is aimed at addressing caregiver communication, assessment, recognition, and education.

Cathy Fooks, President and CEO

In August, we announced details on our new funding initiative, Changing CARE. Since then, we’ve seen an overwhelming response from every corner of the Ontario health care environment. This is evidenced by the nearly 400 participants in our Changing CARE webinars throughout August and September, and the 70 Expressions of Interest submissions we received last week. Furthermore, this response underscores the fact that family caregivers are being increasingly seen as essential health care stakeholders who have a role and need support.

What we found interesting through our engagement work, however, was the common feeling of helplessness from both caregivers and health care providers. Caregivers often said they didn’t know where to go for information and support and health care providers often said they didn’t know where to send them. Changing CARE aims to change this dynamic as well as others.

As a start, we’ve published a number of key reports that are meant to be resources for the field. This includes A Profile of Family Caregivers in Ontario, our Caregiver Resource Hub, and our Stories Shared, Voices Heard reports which outline findings from both our caregiver and health provider consultations gathered during The Caring Experience Project. These resources on our website provide a concrete starting point for anyone looking to improve the family caregiver experience.

It’s well known that caregiver burden is a real issue facing Ontario and that distress levels are rising. This needs to change.

Through our work leading up to Changing CARE, we discovered four broad themes that caregivers experience – challenges related to communication, recognition, assessment, and education.

We’ll be funding up to three projects in support of innovative ideas to improve the caregiver experience. Future system transformation is clearly predicated on families providing support in all aspects of patient care – if we don’t start building system capacity to partner with them now, no one will be well served. Not patients. Not families. Not providers.

Strong Engagement, Strong Research: The Keys to Our Approach


CFooks 2Just as we welcome a new season and warm weather returns, we at The Change Foundation (TCF) are feeling very energized as we move into new phases of our work.

Doing a deep dive into family caregiver issues through grassroots engagement and research has underscored for us just how imperative it is that we continue to focus on integrating and supporting family caregivers as a way to improve the patient and family experience.

At TCF, we believe that this mix of strong engagement and strong research also allows for a unique, more inclusive perspective on how change can be achieved in health care.

Look no further than the past six months as an example, which has seen us release a number of research publications, reach out to both family caregivers and health providers (click to learn more), and continue to share our knowledge at a number of conferences and stakeholder meetings. These kinds of activities are the crux of our approach to evolve Ontario’s health care sector.

Another good example can easily be seen with our Shedding New Light report series. Researched and written by family caregiver Sara Shearkhani, Shedding New Light offers a glimpse into Sara’s caregiving journey, and her struggle with evolving personal responsibilities. These reflections stand alongside a literature review on the stages of caregiving. Overall, the reports serve as important examples of how evidence and lived experience can be used to tell a meaningful caregiving story.

Although it’s encouraging to see evolving literature like this, the more we learn, the more we understand just how much work still needs to be done.

This is especially important from a policy perspective. In this issue’s commentary piece, Lori Hale and Stephanie Hylmar bring forward four key emerging themes for increased stakeholder consideration and action, as identified through The Caring Experience project. These themes are directly informed form our engagement with both family caregivers and Ontario’s health providers and serve as an important starting point for TCF’s next phase of strategic work.

Furthermore, at the launch of our latest report, A Profile of Family Caregivers in Ontario, we issued a call to action for ourselves for the next phase of our strategic plan. Coinciding with the release of that report, dedicated planning has started at TCF to develop the next round of funding opportunities and partnerships aimed at improving family caregiver experiences.

Now is the time for introspection for The Change Foundation to fully realize these opportunities. More importantly, it’s an added chance to ask ourselves how we can continue to be Ontario’s neutral sandbox for positive health care collaboration.

Whatever funding opportunities are developed, they will undeniably involve both family caregivers and health providers as equal partners, with a focus on creating made-in-Ontario solutions that will lead the way in improving caregiver and patient experiences in the province.

With this approach, we can continue to be the catalyst for change in Ontario health care.


Ontario’s health providers bring insight to the other side of caregiving

Health care is often grounded in human interactions, chiefly between the health provider and the patient and in some cases the family caregiver.

Under its strategic plan, The Change Foundation (TCF) has already worked hard to acutely listen to the experiences of family caregivers in the health care system through the first phase of The Caring Experience. Now, TCF is getting ready to share insight from the other side of caregiving coin: Ontario’s frontline health care providers.

Led by Senior Program Associate Frances Roesch, TCF met with nearly 200 frontline health providers—including doctors, nurses, physical therapists and personal support workers—from each of Ontario’s 14 Local Health Integration Networks.

“It’s been such a pleasure to connect with these individuals,” says Frances. “Each provider brings such a unique perspective and all recognize the role and the importance of family caregivers.”

To get to the core of the experiences providers have when they interact with caregivers, Frances has been leading tailored two-hour sessions designed to encourage providers reflect and share the most salient issues. The majority of each session is used for discussion, however each provider is also asked to do a letter writing exercise that asks them to jump 10 years into the future to envision a health care system that fully supports patients and family caregivers.

“Providers and family caregivers agree on a number of fronts,” says Frances, “both groups want to see a health care system that is more supportive and treats everyone more equitably.”

Significant themes have already emerged from this activity over the short term. For example, challenges and opportunities to work with family caregivers vary greatly by health care setting, and many providers have noticed the lack of formal processes for caregiver assessments.

The full results will be released by TCF this Fall, which will incorporate results from a provider survey running parallel with the engagement sessions. For those providers interested in completing the survey, click here.

“There are still a lot of quite compelling findings to share, however it’s still a bit premature to give away too much as more analysis is needed,” says Frances.

As Ontario’s health care think tank, it is imperative that TCF explores all sides of the caregiving issue to ensure we have full understanding, and to facilitate a balanced approach in taking our next step – working with system partners and caregivers to fundamentally change how the health system interacts with and supports caregivers.

Emerging Themes for Change

Lori Hale, Executive Lead, Research and Policy and Stephanie Hylmar, Research Associate

TCExperience_Identity_Clean-FA-med3.3 million people in Ontario identify as family caregivers (The Change Foundation, 2016). These individuals provide critical and ongoing support or care to a family member, friend or neighbour. As an essential part of our health and community care systems, family caregivers often have extensive knowledge about health care from their experiences navigating the system alongside the patient.

As a result, family caregivers can provide unique insight on how to meaningfully improve Ontario’s health care system.

The Change Foundation has heard directly from family caregivers and frontline health providers through in-depth engagement activities as part of our strategic plan and The Caring Experience project. We asked both groups about their interactions with each other across health care settings—What got in the way?  What went well? What could make it better?

Through this process, we were able to identify four overlapping emerging themes that serve as a starting point for increased stakeholder discussion, consideration and action:

 1) Recognition of family caregiver role and responsibilities

At the outset, family caregivers don’t recognise themselves as a “family caregiver.” They are just family stepping up to look after a loved one. As they begin their task, they begin to realise there is a role and it’s an important one.

Many family caregivers said they were often looking for basic kindness, respect and acknowledgement from the health providers looking after their family member. Family caregivers want to be seen as a valuable member of the care team able to offer vital information for care planning.

For their part, providers did recognize the important role family caregivers play in the care of their patients, yet they often felt ill-equipped to provide adequate support and were unaware of what supports might be available in the community.

2) Family caregiver assessment and identification

Identifying the main family caregiver for a patient can sometimes be challenging. In times of illness many family and friends rally to the patient’s side, but identifying who will be the primary support is not always easy. Once identified there is seldom much opportunity to sit down and assess what the caregiver will need to fulfil their new role.  Providers pointed to this challenge repeatedly in our engagement with them. For family caregivers, this lack of identification and assessment meant they constantly had to stake a claim for information and other needs.

3) Better communication between caregivers and system providers

Communication between family caregivers and providers across health care settings was a major and overlapping theme. Serious challenges were identified by family caregivers in terms of lack of information and difficulty in navigating a large and multi-faceted health system. Providers remarked that system and funding barriers also hampered communication, not only with family caregivers, but with fellow providers. In every engagement session, communication ran through discussions and various reflections as a common thread and was identified by participants as an area for immediate action.

4) Improved Health and Community Care Supports

Lastly, both family caregivers and providers recognize the need for better supports such as skills training, coping mechanisms, and respite. Simply needing “a break” was top of mind for many family caregivers, as was a request to have contact with consistent home care staff. Providers also recognized that transitions between care settings could be unorganized causing problems and frustration, signalling another area for increased support and communication.

At The Change Foundation, we’ll continue to engage with all health care stakeholders to evolve our system. Over the summer we are developing new funding opportunities and partnerships for organizations interested in working differently with family members to improve the patient and caregiver experience. We are excited to see where patients, families, and providers can work together to make change happen.



Herklots, H. (April 27 2016). Caregivers: Lessons from the UK, Opportunities for Ontario (presentation). Toronto, ON Canada.

Torjman, S. (2015). Policies in Support of Caregivers. Renewing Canada’s Social Architecture.

The Change Foundation. 2016.  A Profile of Family Caregivers in Ontario.

Looking Back and Looking Forward: The Caring Experience

Genevieve Obarski, Executive Lead Program Implementation & Catherine Monk-Saigal, Program Associate

As many of you know, The Change Foundation (TCF) and the Ontario Caregiver Coalition (OCC) spent much of January and February of this year travelling across the province to hear directly from family caregivers for The Caring Experience project. From Thunder Bay to London to Ottawa, we heard unique perspectives at eight different caregiver workshops.

However, as different as these stories were, all were connected to similar themes. Though we’ll be releasing a comprehensive report on our research and engagement work with family caregivers and health providers in the coming months, we wanted to take this opportunity to look back on some of our own personal reflections.


Reflection 1: Caregiving takes a deep and varied emotional toll.

All eight caregiver workshops we held were emotional experiences. As some told their stories, they shed tears – others became frustrated, even angry. Regardless, it was clear to the TCF and OCC staff representing the project team at these workshops that caregiving takes a deep and varied emotional toll.

This might not come as a surprise. Family caregivers are often involved in providing very personal support. From preparing meals and helping with household chores, to assisting with medical tasks or advocating for someone in hospital, caregiving responsibilities can be stressful and some skills may require practice.

It should be noted, however, that caregiving can elicit tremendous personal strengths, and as seen in our feature with Katherine Arnup, it can intensify relationships between siblings, spouses, and friends. It was truly evident during these workshops that family caregivers are deeply dedicated to those they are supporting.


Reflection 2: Caregivers need empathy and true understanding from health providers and from their personal social circle.

One of the things we heard over and over from family caregivers was the need for empathy and understanding, even dating back to our kick-off telephone town hall. Caregiving can be a unique experience, meaning that it can be hard for those who haven’t taken on such responsibility to fully understand the challenges faced by family caregivers.

However, what many family caregivers said they wanted was simple: more recognition, more empathy, more understanding. It became extremely clear to the project team that more time is needed to listen to family caregivers and provide whatever support we can, regardless of where we fit in the health and community care systems. For health providers, for example, this could mean simply asking how someone’s day is going, speaking directly into their eyes, or recognizing a family caregiver’s voice when making important care decisions. For friends and family of caregivers, this could be offering help, or even a cup of coffee and some time to talk things out. These gestures of goodwill can go a long way for family caregivers who may feel like they are falling through the cracks.


Reflection 3: Caregivers are an extremely dedicated and resilient group of people.

Lastly, we have to express the dedication and resilience that each family caregiver showed at the workshops. All were taking time out of their day to tell their story, time otherwise spent caring for someone. We recognize how hard this must have been for some, but listening to them and hearing about all they have done to advocate and care for their family and friends in face of many challenges was eye-opening.


Final thoughts

As we look towards the new phase of The Caring Experience, now focused on hearing from frontline health providers, we’re excited to see what common ground will be discovered between caregivers and providers, and how this will inform our future work.

However, The Caring Experience project’s first phase will be remembered as an exceptionally powerful experience and a once-in-a-lifetime chance to connect with groups of extraordinary people. Family caregivers are the glue that holds Ontario’s health system together. Therefore, it’s imperative they have a permanent and recognized seat at the table.

As we continue our work, we will ensure that the voices of Ontario’s family caregivers remain strong and fully represented.

Q&A: Michelle Lewis, The Powerhouse Project

If our work through The Caring Experience project has shown anything, it’s that no one family caregiver journey is the same. Some journeys can last years, others a matter of months, all with varying intensities. However, one type of caregiving experience that is often invisible is that of young carers – children and young adults providing support or care for a family member.

Michelle Lewis, The Powerhouse Project
Michelle Lewis

That’s where The Powerhouse Project by the Young Carers Initiative comes in. The Powerhouse Project offers support programs to young carers in the Niagara Region, as well as Haldimand and Norfolk counties. We sat down with Michelle Lewis, Executive Director of the Powerhouse Project, to learn more about who young carers are and the impact of this essential and wonderful project.

  1. Who are young carers? How might the role of a young carer differ from that of an adult caregiver?

Young carers are children, youth, and young adults who provide care for a family member due to a chronic illness, disability (physical or intellectual), mental health issue, addiction issue, or socioeconomic factor (single parent family, language barrier, etc.).

In addition to a caregiving role, young carers may also experience the emotional impact of a family member needing their support. Young carers may provide personal care, sibling care, financial/practical care, emotional support, complete household chores, and so much more for their relative needing assistance. 

The key differences between young carers and adult caregivers is that having the added caregiving responsibilities within the home has been shown to have negative impacts on young carer identity development, social development, academic achievement and psychological well-being as well as to limit opportunities for pursuing education.

  1. It’s important to remember that young carers are supporting their family in very grown-up ways, but also are trying to experience what it’s like to be a kid. How does the Powerhouse Project help these young people strike some kind of balance?

I think the most important thing we do at Powerhouse Project is validate the caregiving experience for our young carers and help them understand the importance of their role. By reducing the stigma and negativity around the young carer experience, we can then shift the focus onto their own self-care and that there is nothing wrong with taking time for themselves. We actually have a life skills program called Balance where we teach just that — how to balance all the demands of school, friends, family, with caregiving on top of it all. Time management, stress management, effective communication, and being more self-aware are all a part of the lessons of this program. Our weekly respite program, Carers Night Out, gives young carers in various communities time away from home where they can connect socially with their young carer peers and take time to do age-appropriate activities.

  1. The Powerhouse Project serves a fairly large and sometimes rural area of Southern Ontario. What challenges do you face in bringing these programs and services to young carers?

One of the biggest challenges for us is transportation, which is a barrier to service for many of the families we serve. Some of our parents have lost the ability to drive, or don’t own a vehicle, which prevents them from being able to drive their children to programs.

When serving a rural community, the distance between houses can be significant. We do our best to bring programs to the communities where most of our clients reside and use the personal vehicles of staff to provide transportation to those most in need, but our capacity for this is quite limited.

Another challenge for us is identifying young carers. Given that this has been deemed the ‘silent population’ of caregivers, without young carers self-identifying or having someone advocate for them, it is very hard to serve this population. We know there are many more young carers out there. We have worked hard to establish strong referral relationships with key agencies in the communities we serve to assist with identifying young carers. Working with health care professionals is the next desired step for us.

  1. The interactions between young carers and those working in the health care system must be unique. What kinds of things have you seen or heard through your work?

Over the past few years we have been made aware of some of the experiences our young carers have had. For example, one youth had to call 9-1-1 in the middle of the night for his mom and was not allowed to ride in the ambulance, so he was left home, alone. Another youth had to get his mom to the ER knowing she was experiencing anaphylaxis. While in the waiting room, his mom’s condition became critical before he was listened to as he was trying to advocate for his mom as he knew exactly what she needed. One of our young ladies has interpreted for her father at medical appointments for the last 10 years. She has felt respected by the doctors she has interacted with. She has also made suggestions for the design of her father’s prosthetic legs as they cause her pain when she puts them on her father.

However, we are thankful for the opportunity to work with The Change Foundation as this is an area we would like to focus more on.

  1. What’s next for the Powerhouse Project for 2016 (and beyond)?

We are currently creating a strategic plan to map the direction for our organization which will have a large fund development focus. We need to access more funding in order to continue the wonderful path we are on.

There is so much potential and we know there is need for young carer support. To help with this, we will continue to work with Dr. Heather Chalmers in the Department of Child and Youth Studies at Brock University to ensure our services are evidence-based.

For more information on The Powerhouse Project, please visit their website:


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