changing care

Recipes for Change

Genevieve Obarski, (Recently retired) Executive Lead, Program ImplementationG obarski bio pic

I’ve enjoyed cooking since I was a teenager — almost as long as my 40-year career in health care, from which I retired at the end of June. The latter portion of this career was spent helping create and drive positive change in the healthcare system through quality improvement, first in the United States, and then in Ontario. 

Just as there are many ways to roast a chicken, whip together a savoury pesto, or bake a chocolate cake, there are many ways to go about creating meaningful change at a system, organizational, provider, patient and family caregiver level. I have had the privilege of seeing just such positive change during my work with The Change Foundation, by working alongside organizations and communities in the PATH project and Changing CARE partnerships. Engaging in this work over the past 10 years crystallized key ingredients for successful and meaningful change.

As I reminisce on my career — the challenges, triumphs and people that helped promote positive change, and prompted by the whimsical retirement gift given to me by my Foundation colleagues pictured on the right – I wanted to share what I consider Recipes for Change: Gen’s Way!

Image Recipes for change

  • Prepare: Head chefs or senior leaders, set a few key priorities. What does the organization need to improve experiences for patients and their families? A chocolate cake, a pasta dish, or something else. Be sure to clarify why that dish or those priorities are important for the organization.
    • Everyone in the organization should be hungry for the dish. Are the providers, staff, families and patients ready for the dish and, if not, what needs to be in place to prepare them? This includes things like training, awareness, empathy and time to build relationships.
    • Gather the key ingredients – space, people, training and time that you will need to create the meal.
  • Combine: Involve the sous chefs, the dishwashers, the prep cooks. A head chef can’t create meals in isolation; it takes a whole team, communicating with each other, working together in trusted relationships with a shared vision.
  •  Add: Assume and embrace the notion that the people eating the food are the experts of what tastes good to them. They should be invited in to help you create the dish. After all, a dish is only as good as the people eating it say it is. Why create it in the first place it if it doesn’t taste good to the people you want to serve the dish to? This is the premise of co-design. 
  • Pre-Heat: It is the head chef’s role to fix any broken equipment that would prevent or delay completion of the dish. This may involve removing regulations, processes or people that are barriers to creating the dish.
  • Season to taste: Encourage local flavour additions and flexibility. Allow for trial and error to find out what tastes good, adjust cooking times, try alternate ingredients and spices to create a dish that reflects local tastes and sensibilities.
  • Simmer & taste: Don’t wait until you think you have achieved perfection to serve the meal. It doesn’t have to be perfect to taste good and to be nutritious.
  • Serve: Those who manage policy processes and funding in the healthcare system must give organizations, and their communities, permission, financial support, flexibility and the autonomy to create the dishes that are tasty and nutritious for their organization, and those they serve. When communities are empowered to make changes, patients, family caregivers and providers thrive.

I am so honored to have shared this last course of my healthcare career with colleagues and friends at The Change Foundation, and with the patients, caregivers and providers who nourished and sustained the PATH and Changing CARE projects.   

Learning along the way: Sharing lessons from Changing CARE

Lori Hale, Executive Lead Research and Policy

People often ask us how to truly co-design and engage with caregivers and healthcare providers.

In Lessons from Changing CARE: The Discovery Phase of Experience-Based Co-Design, we do our best to answer that question by presenting 40 practical tips based on what our four Changing CARE teams have learned in their journeys so far.

We learned from our experience with the PATH project that collective learnings should be shared throughout a project’s lifespan, rather than at the end. Now that we’ve just passed the one-year mark of Changing CARE, it’s an ideal time to share what we’ve learned so far. Here are some of the findings from the report:

  • A collaborative and co-designed approach to evaluation and measurement at the outset of the project levels the playing field for all team members and stakeholders.
  • You can’t measure impact if you don’t know what your strategic priorities are, so it’s important to establish priorities and goals early on.
  • Sharing project milestones, successes and failures is key to learning, adapting and co-designing.
  • It’s important to reflect on the lessons learned early on and adapt along the way.
  • Nothing compares to lived experience.

After collectively hearing from over 450 caregivers and over 600 providers during the discovery phase of experience-based co-design, each of our Changing CARE teams has evaluated themes to identify priorities for co-designing improvements and innovations to ultimately improve the interactions between family caregivers and healthcare providers.

This report covers a wide range of these themes, and includes:

  • Tips on executive sponsorship.
  • Lessons on engagement planning with family caregivers.
  • Communication and feedback ideas.
  • Insights on provider engagement.

Is it our hope that others will use and adapt these tips to support their family caregiver and healthcare provider engagement efforts.  

As we continue work with Changing CARE and each project focuses on co-designing innovations and solutions with family caregivers and providers, we intend to share more lessons and tips along the way. 

Up Next: learnings from co-design.

Lessons from CHANGING CARE

In 2017, after a long and detailed search, The Change Foundation identified four Changing CARE partnerships from across Ontario to receive funding and support over the next three years to improve the caregiver and provider experience for their communities.

Changing CARE is the “action phase” of The Change Foundation’s Out of the Shadows and Into the Circle 2015-2020 strategic plan—following on our 2015-2016 year of listening and learning from family caregivers and healthcare providers across Ontario.

Now that we’re more than a year into Changing CARE, it’s the ideal time for us to stop and reflect on the collective path we’ve taken so far, and release our learnings on the engagement phase of co-design.

Lessons from Changing CARE: The Discovery Phase of Experience-Based Co-Design focuses on our four teams’ first year of listening and learning from, and co-designing with the family caregivers and healthcare providers in their communities.

As the first in a series of reports focused on learnings and lessons from Changing CARE, this paper describes what the Changing CARE projects have learned during the discovery phase of their experienced-based co-design.

The report features 40 practical tips that are organized in five sections:

  • project planning
  • engagement planning
  • recruitment for engagement
  • engagement
  • post engagement

We hope these tips and lessons along the way help you use and adapt what we’ve learned to help you co-design solutions in your own setting.

We want to see improved caregiver and provider experience all across Ontario, and beyond—This report is the first step on that journey.

Click to download full report

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.

Changing CARE: Success built on a strong foundation

Harpreet Bassi, Senior Program Associate

It’s hard to believe that it’s been a year since the four Changing CARE teams launched their innovative, caregiver-focused projects. 

One year, 15 cross-cutting working group sessions, 17 bi-weekly project managers meetings, and numerous steering committee meetings, to be more precise. Most impressively, across the four teams, more than 650 caregivers have participated, informed and partnered on the change they’d like to see.

Over the course of that year, the teams have gone through their planning phases, completed local discovery and engagement, and moved to design and implementation, all within the context of co-design. 

When we selected the four teams, we were focused on finding partnerships and teams that truly understood the critical role caregivers play in the health care system, and embraced the need for change. What was so interesting—but also caused some hesitation—was that these four projects were so diverse in scope, design and implementation. It wasn’t clear how they’d be able to collaborate and build on each other’s work and learnings.

It didn’t take long to see the magic of how they’d all work together. I think that’s one of the key learnings from our project so far—that when people come together with a common purpose, no matter how diverse the teams are, there’s always something to learn from each other.

There’s no place that this is more evident than at the bi-weekly project managers’ meetings that bring these teams together to share ideas, problem solve, learn from each other and celebrate successes. These meetings have become integral to Changing CARE.

Yes, that’s right. This is a blog post to celebrate meetings.

At their best, these meetings are an open dialogue on how to leverage each other’s experiences and work, and to inform and improve the other projects. This is not to say that these meetings aren’t on occasion simply a laundry list of what the teams are working on. But that’s okay because it’s important for the other project managers to know they are not alone in the day-to-day operations of this type of innovative project. 

There are three things that contribute to the overall effectiveness of the bi-weekly project managers meetings

  1. Shared values: Every phase of these projects is co-designed with caregivers as equal decision-makers alongside providers and administrators. Each of the teams, and their respective organizations and partners, recognize the value caregivers bring to the health system. This is a shared commitment not just to the process of co-design, but to the principles that underpin it. These project teams listen and learn together, are flexible, adapt and embrace ambiguity.
  2. Joint accountability: The project managers chair the meetings and everyone informs the agenda. The project managers make a concerted effort to participate and come prepared to share the work from their projects. The Change Foundation acts as an equal partner by hosting the meeting, contributing to the agenda items and information which would be useful to all the teams, and taking notes.
  3. Operational Efficiency: There is a standing meeting date and time for the entire three-year duration of the project. The project managers know when it is and where to go, there are no surprises. The agenda is posted, The Change Foundation acts as host, and discussion notes are posted following each meeting. We use video-conferencing so we can see our colleagues from across the province.

My two metrics for measuring the success of these meetings are: 

  • No matter how busy, the project managers’ show up for the calls and;
  • No matter how often I ask about cancelling the meetings, the answer is always a resounding no.

Over the past year, I’ve had the privilege to be The Change Foundation participant on these bi-weekly project managers’ calls, and am impressed and inspired by the commitment of these individuals to improve the caregiver experience. 

Thank you Jacobi (Improving CARE Together), Joanne (EMBRACE), Michelle (Connecting the Dots), Jennifer, Susan and Erika (Cultivating Change). 

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 info@changefoundation.com

Changing CARE for caregivers

Genevieve Obarski, Executive Lead, Program Implementation

Back in 2015, when we first waded into the unknown waters of the caregiver experience, we weren’t sure what we were getting into. But what we did know was that The Change Foundation, as an independent and unbiased organization, was uniquely placed to explore this issue with both caregivers themselves and the providers who intersect with them in Ontario’s health and community care system. So, while the path forward wasn’t exactly clear, we were confident it was the right time and opportunity for us to lead this necessary provincial conversation.

From our first tentative focus groups, through the hundreds of discussions with caregivers and providers in 2016, to the current engagement now being held with caregivers and providers in our Changing CARE teams, I am convinced we chose the right themes and path to advance this work in Ontario.

We kept all the conversations disease and caregiving situation “agnostic,” and we asked people to tell us what would make a better partnership between families and providers in serving those who are cared for in health and community services. We heard the same things back then as we hear now:

  • Caregivers want to be recognized for the important role they play, included in discussions and decisions about their family member and treated as a partner in their care.
  • Caregivers want respectful timely, accessible and inclusive communication.
  • Caregivers want to be asked how they are doing and what the system and its providers can do to facilitate their “work” of being a caregiver.
  • Caregivers want to have easy access to the knowledge, supports and training that are necessary for them to be the best caregivers they can be.

The Change Foundation is promoting the revolutionary idea that it is the job of the health care system to create the conditions and the culture for partnering with family caregivers. This is the experiment we are conducting with the Changing CARE projects we are supporting.

We believe we have found four partnerships that have the three key components to successful improvement: the will, the ideas and the execution of changes.  

The Foundation has the privilege of providing resources to these four groups to support engagement, co-design, and implementation, which we and the Changing CARE teams believe will lead to significant positive changes in the provider-family caregiver partnership and interactions. 

The observation that these themes remain universal in the engagement we have had, and are continuing to have, with caregivers and providers, is proof to me that we chose the right course. I am convinced that by supporting, highlighting, and teaching others about the work that caregivers and providers are doing together in teams in the Changing CARE projects, that we can make a difference in the experience that Ontario’s caregivers and providers have in partnering to support those receiving health care services.  

Burning Platform? Cracked Foundation? Either way, change is needed

Cathy Fooks, President & CEO

Often, it takes a spark — a burning platform – to make transformational change in our healthcare system. When there’s a lack of a major crisis or tragedy, there’s often the lack of wherewithal or ability to upend the status quo. So I wasn’t surprised to hear how concerns about a failing social services system was “the burning platform” to integrate health and social services in a small town in England.

It’s an expression you hear all the time when people get together to talk about improving healthcare. We need a burning platform, someone inevitably says, then we could get something done.

While it’s true a crisis often drives reform, it’s a pretty grim metaphor — do we really want to achieve better care in the future by having things spin out of control now? And what are we saying to people who are struggling with the system as it is when we imply regret that in Canada we can’t seem to manage anything worse than a smoulder?

Discussions often centre around what some Ontario organizations are doing to promote integrated care, or how badly the system is failing to deliver it for some patients. But the more I thought about it, the more I wondered whether it’s the right metaphor. We can debate whether Ontario has a burning platform in healthcare but the visual for me is different. I think what we have is a cracked foundation: somewhat hidden and getting worse.

The last decade of policy “reform” has focused on better integrated care across multiple access points – primary care, hospitals, home and community and long term care. No one is arguing we have achieved success yet. But, it’s clear the emphasis is on living longer at home and in the community, with proper support. This hasn’t completely arrived and the cracks are beginning to show, particularly as the load for basic care is shifting to families and friends – supported or not.

At The Change Foundation, we hear this again and again in speaking with caregivers and providers. Caregivers talk about increasing levels of stress and burnout and providers recognize people need support but don’t know how to access it and don’t have time to research local resources – if they exist.

The thing about a cracked foundation is that it’s easy to ignore even though the homeowner knows it’s there. You may choose to do nothing about it, but you know the house is crumbling. The floor sags, doors won’t close, lines creep across the walls, yet the house keeps standing. Until it doesn’t.

At the Change Foundation, we are working to change this. Four Changing Care teams are working directly with their family caregivers and their professional staff to fix that foundation. We are looking forward to showcasing their innovations. Some simple fixes perhaps but necessary repairs.

 

The State of Caring: UK & Ontario caregivers struggling with similar issues

Lori Hale, Executive Lead, Research & Policy

In July, Carers UK released their annual State of Caring report, which is based on the results of surveys with over 6,600 carers in the UK, and is meant to serve as a snapshot of life for carers in 2017. As I read through the report, I couldn’t help but notice the similarities between the carer experience in the UK, and the family caregiver experience in Ontario.

But before I get into it, I want to take a second to explain the terminology: the people we refer to here in Ontario as family caregivers, or sometimes just caregivers, are referred to as carers in the UK. But really, both terms are referring to the same people. And just to add an added layer of complexity, when family caregivers in Ontario are under 25 years old, we refer to them as young carers, not as young caregivers.

At The Change Foundation, we’ve done some research of our own into the caregiver experience in Ontario. As we presented in our 2016 report, A Profile of Family Caregivers in Ontario, we analyzed responses from 2,200 caregivers who participated in a 2012 Statistics Canada survey.

We also heard from 300 caregivers as part of our Caring Experience project, which we reported on in our Stories Shared, Voices Heard: Ontario’s Family Caregivers report.

While our surveys and Carers UK’s survey can’t be compared as apples to apples, due to many differences in terms of design, population surveyed and time period studied, there are nevertheless many common themes that emerged.

For example, the State of Caring report highlights the following themes:

  • Carers don’t feel valued or recognized. Three quarters (73%) of carers felt that their contribution was not understood or valued by the Government, and a majority felt that the public does not value their contribution.
  • Carers consistently aren’t being properly assessed and supports aren’t being put in place. Of the 68% of carers who said they had received a carer’s assessment, over half said their ability and willingness to provide care was not properly considered in the assessment and in the support they received; and only a third felt that the support needed to look after their own mental and physical health alongside caring was thoroughly considered and reflected in the assessment process. The Care Act in England defines new rights around assessments for carers, but as the State of Caring report points out “responses from carers show that this does not necessarily mean carers are getting the support the assessment identified them needing.”
  • Carers lack access to practical support and respite. A quarter of carers said they receive no practical support to help them with caring; for those who are caring 50 hours or more a week, 20% receive no practical support to help them. A quarter of carers said they hadn’t had a day off from caring for more than five years, and four out of ten said they hadn’t had a day off for more than a year. Without proper support, including respite, “carers are pushed to the breaking point and have to give up work, stop caring, or even go into hospital themselves.”

We heard very similar things from caregivers in Ontario. In fact, our Changing CARE project, which emerged from our Caring Experience work, is built around very similar themes: 

  • Communication: better communication and information exchange between health care providers, and between caregivers and health care providers.
  • Assessment: more identification and assessment of family caregivers to determine their needs, abilities and expectations.
  • Recognition: formal recognition of the role caregivers play in our system by the patient’s care teams and by caregivers themselves.
  • Education and supports: more opportunities for caregiver support and education to develop key care skills and knowledge.

Our commitment to family caregivers goes beyond the boundaries of Changing CARE—We are also committed to further engaging with family caregivers in Ontario to truly understand their experience as they interact with health and community care providers. We applaud Carers UK for their commitment to getting to the root of the carer experience in their jurisdiction. We plan to keep doing the same in ours.

WHAT’S BEING SAID

“A head chef can’t create meals in isolation; it takes a whole team, communicating with each other, working together in trusted relationships with a shared vision” – Read more in our blog, Recipes for Change: bit.ly/2LroBdH