provider engagement

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 info@changefoundation.com

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 info@changefoundation.com

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.

 


References:

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.

Balance Key to Our Work

CFooks 2Over the past six months we have listened intently to the voices of Ontario’s family caregivers. This past winter, we crisscrossed the province for The Caring Experience project, stopping in eight cities to meet with family caregivers at different workshops.

I was fortunate enough to attend the first workshop in London, Ont. It was striking to hear family caregivers speak with such candor and emotion – some for the first time. For many, I think the experience was cathartic. I even saw participants staying back to continue discussion, exchanging emails and phone numbers.  And, while there were some stories highlighting very positive experiences, for many it is a largely unsupported role.

This first phase of The Caring Experience has drawn to a close, and we’ve now begun to hear from those who work in Ontario’s health care system – Ontario’s health care providers.

Through a series of engagement sessions with frontline health care providers, we’re casting a wide net to ensure we hear many perspectives—from residents training in rural medicine to personal support workers and nurses. As we won’t be able to meet with everyone, we’ve also created a survey that providers can complete online.

This new phase is extremely important to us as we seek a balanced understanding of the spectrum of family caregiver interactions in the system. We hope to see what common ground exists between those who use the system, and those who work in it. Taking this more holistic approach will serve us well when we move into the next chapter of our strategic plan: the action phase.

You may also notice that this edition of Top of Mind includes the release of our latest publication, Charting a New PATH—a three-part report that describes what we learned through our Partners Advancing Transitions in Healthcare (PATH) project.

PATH was a tremendous learning and growing opportunity and we’re confident it has helped to lead an increase in the number of forums and opportunities for patients, family caregivers and providers to come together.

However, while we’re encouraged by the strides being made for meaningful patient engagement in Ontario, it’s extremely vital that these initiatives are more than a “tick box” exercise. There are a series of important and sometimes difficult decisions that need to be made to ensure that the expertise of patients and family caregivers are given equal weight to all those sitting at the table. Taking time to really listen to the concerns of these individuals is one step, but finding the right ways for action, recognition, and potentially compensation often take more time and thought. That’s why we share so much of what we’ve learned through numerous publications, such as Rules of Engagement and At Work, In Play.

Lastly, I’m excited to mention our upcoming Hot Talks on Health event with Helena Herklots, Dr. Joshua Tepper, and family caregiver Katherine Arnup, PhD. It’ll be a dynamic discussion where we’ll hear three unique points of view, and gain insight on what has been done in the United Kingdom for family caregivers, and what potential pathways exist for Ontario health policy. I sincerely hope you can join us.

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.

2015-2020 Strategic Plan

The Change Foundation releases new 5-year strategic plan focused on unrecognized “glue” of our system: family caregivers.

“Our health care system is dependent on unpaid caregivers. And the reality is that these caregivers are often not recognized or respected for the role they play. At best, there is an inconsistent approach to family caregivers. In many cases, they are not even considered as key members of the care team.” (The Change Foundation, Strategic Plan)

The Change Foundation today announces the focus of our next five-year leg of strategic work – Out of the Shadows, Into the Circle. We plan to build on our past two strategic plans focused on improving experiences for patients and family caregivers as they move across Ontario’s healthcare system. Although many ideas and trends were evident, there was one consistent theme – the vital, yet often unrecognized, role of informal or family caregivers in the system. We are committing to shining a light on this area. Based on what we know already, we believe that valuing and recognizing family caregivers as integral members of the health care team should be an urgent focus for our health system.

Our strategic goal: to improve the experience of family caregivers as they help their family members transition through and interact with Ontario’s health and community care systems.

Research tells us that most Ontarians have been or will be a family caregiver at some point. Twenty-nine percent of the provincial population – or 3.3 million people – provide some form of support, assistance, care or enrichment to a family member or friend. Both women (53%) and men (47%) in Ontario take on caregiving roles.

We believe, that by recognizing, facilitating and supporting the role of the family caregivers, we can improve patient experience, coordinate care more effectively and create an environment in which the highest quality health care can be delivered. This plan was developed with input, insight, and ideas from over 100 people, including our Strategic Plan Renewal Working Group, our Sounding Board and TCF’s citizen’s panel, PANORAMA.

Our agenda will evolve and flesh out in the first year, The Change Foundation will focus on listening and learning to better understand the family caregiver experience as part of the patient experience and to identify promising models or initiatives for effective and collaborative engagement between family caregivers and providers. This exploratory work will help us scope out and identify our specific projects and policy work that will be the focus in the remaining years of the strategic plan.

Key Work Ahead

Develop a framework for understanding a focus on family caregivers as part of the patient experience.

We will use the framework to illustrate how the focus of the Foundation fits within the big picture and the important work of other organizations. This will help us identify where our focused contribution will have the biggest impact.

Learn more about family caregivers in Ontario.

We will ask: who they are, what they need, who is helping them and how they are helped, what are common challenges for all family caregivers, what are unique challenges for sub-groups of family caregivers.

Engage with family caregivers, patients and providers.

We want to learn more about the challenges that family caregivers encounter when they interact with providers and the health and community care systems and in particular, we want to learn more about the issues facing diverse and multicultural families. We will also engage with providers to understand their frustrations with the status quo.

Develop an engagement plan for moving forward.

We will develop an engagement plan to best listen and learn family caregivers, patients, providers and system representatives as we further define and implement our strategic plan.

Learn about innovative provider and family caregiver partnerships and initiatives.

We will undertake a systematic review of the literature and informally published reports and documents to learn more about innovative initiatives within Ontario and in other jurisdictions where providers and organizations are collaborating with family caregivers and patients for mutual benefits. We will use this reconnaissance to shape and identify our priority initiatives.

Learn about efforts to integrate health and community care.

We will also monitor efforts in other jurisdictions to join-up and better integrate health and community care given how this integration can help to improve the experience of family caregivers and patients.

Stay tuned for more announcements on how we plan to move from “thinking” to “doing” over the life of this plan. The Foundation looks forward to working closely with all parts of the system as we move forward on tackling this important next frontier – we are all in this together.

 

Creating The Space to Lead Change: An Independent Analysis of the Change Foundation’s Journey on the Frontline of Healthcare Transitions

The Change Foundation (TCF) made a bold decision to make a significant investment in one system change initiative in a healthcare transitions environment.

This instructive, 23-page case study reviews the early process of getting to, and moving on The Change Foundation’s ground-breaking Northumberland PATH projectThe two-year, $3-million PATH project is the Foundation’s largest and most ambitious to date.  Through Project PATH, the Foundation has committed to engaging and supporting a community coalition of cross-sector providers and patients and caregivers to co-design how care is delivered, addressing healthcare transition problems that they identify for improvement.

Marc Langlois, a social innovator and evaluation consultant offers keen, objective reflections on the think tank’s unique balancing act of being a funder embedded inside a change project; thus offering valuable insight to other foundations, organizations contemplating similar “disruptive” work.  That is, (as a funder), striking the right balance of being hands off and letting the local project team lead to find unique solutions, while also overseeing and intervening for best results. The case study is based on six key informant interviews and document reviews. The key informants were selected from the Foundation’s staff, the PATH convening organization, a citizen advocate involved in the project, and a Fairness Advisor contracted to oversee the PATH community selection process. Based on themes discussed during the interviews, specific PATH project-related documents were reviewed to verify and clarify information.  In addition, evidence and perspectives from peer reviewed journals were reviewed to place the article in the context of the philanthropy sector and change management field.

Using an “Open Systems Theory” filter, Langlois explores the Foundation’s experience with creating space to learn, plan and act within its own organization and within its support of the PATH project.  Langlois articulates themes that defined The Change Foundation’s principle-based leadership during the early stages of the PATH project.  Langlois notes that as in most comprehensive collaborations, PATH’s potential was in its collective power that brought together diverse community stakeholders around shared ideals and principles to be a true change catalyst.

WHAT’S BEING SAID

All three hospitals in our first case studies report understood the power of stories to unite patients, families and professionals & remind them of the reasons they want to improve care. Learn more about the hospitals profiled in the case studies: bit.ly/2Stemsl pic.twitter.com/qXkJiPW1ep