PATH

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.   

Solving the integration puzzle

In our 2011 report, Winning Conditions to Improve Health Care, we predicted that it was “likely that some reorganization of LHINs and CCACs <would> occur.” From our perspective, we believed that reorganization would be “a huge opportunity to better align decisions and resources with priorities and purpose.”

This opportunity is now here. As of June 21, 2017, the CCACs have merged with the LHINs across Ontario. Although we all agree that change was and is needed to integrate care and improve patient and caregiver outcomes and experiences, we also know that structural changes alone won’t do the job. Ontario needs a fundamental shift to embrace patients and caregivers as partners in healthcare.  Merging organizations is just a small piece of the puzzle.

Around the time that the LHINs were created in 2006, The Change Foundation looked at how integration was being done around the world. That research helped us identify key elements that are critical for integrated care. We have highlighted those elements in our work over the past few years. They are:

  • Include and value patient and caregiver perspectives
  • Provide seamless care
  • Pay attention to relationships, not just governance structures
  • Funding should follow the patient
  • Performance management should be linked to patient outcomes
  • Information management needs to be integrated and accessible

In our view, many of these foundational elements still need development in Ontario. The goal of an integrated system of care, which will lead to improved outcomes and better patient and caregiver experiences, doesn’t come about without a wholistic approach to change.

Take the Partners Advancing Transitions in Healthcare (PATH) project in Northumberland, as an example. PATH was a partnership between patients, caregivers and 12 cross-sector health care organizations in Cobourg. By co-designing the approach to care, based on patient and caregiver experience and input, they designed changes to improve people’s experience moving within and across health care organizations in each patient’s healthcare journey. There was a notable cultural shift in Northumberland—within health care organizations and the community—that is still evident today.

More recently, as part of our Changing CARE initiative, the Change Foundation is collaborating with four partnerships in Ontario that will change the way care organizations, providers, caregivers and patients work together. This shift will be achieved by developing programs and resources that address four areas of caregiver needs—Communications, Assessment, Recognition and Education—identified through extensive engagement and partnership with caregivers and providers. Most importantly, each of the Changing CARE partnerships demonstrated a true commitment to co-design with caregivers, and a passion and dedication to make meaningful change. They ‘get’ it. Yes, a structural change will be part of their implementation, but it won’t be the driver of the needed cultural shift.

When we look across the system, we are encouraged by the more prominent role that caregivers are playing in Ontario’s health care landscape today compared to 2006. As we said in Winning Conditions, “To accomplish [an integrated health system], we need to seek and be guided by the lived and expressed experience of the people now navigating the health care system.”

Although there is work to do to get more of the fundamental pieces in place to support caregivers within the system, we have begun tapping into their expertise. As the positive momentum continues, we are hopeful that the recognition and awareness of the role of caregivers will continue to grow among Ontario health care organizations and providers. It is only when patients and caregivers are true partners that we’ll be able to achieve true integration.

Bringing the Canadian caregiver perspective to 54 Countries

The Change Foundation participates in the International Conference for Integrated Care

Jodeme Goldhar, Executive Lead of Strategy and Innovation & Lori Hale, Executive Lead of Research and Policy

Many jurisdictions across the world are facing similar challenges when it comes to partnering with patients and their caregivers to build integrated health care systems, which in turn support better patient and caregiver experiences. And each of these jurisdictions is tailoring its own solutions to its own unique system and population.

When international partnerships and information pipelines are created, such as they were at the International Conference for Integrated Care (ICIC) in Ireland in May, 2017, then what’s happening on one side of the world can be put into practice on the other. That’s how change is made.

ICIC was hosted by the International Foundation for Integrated Care and the Republic of Ireland’s Health Services Executive. Together, 1,200 delegates from 54 countries got together to discuss Building a platform for integrated care: Delivering change that matters to people.

Through our work first with the PATH project, and now Changing CARE, The Change Foundation has worked, and is working, with multiple sectors and organizations to improve integration in Ontario. We were honoured to present on what we’ve learned in our work so far, as we pursue our new strategic goal of improving the experience of family caregivers as they help a family member transition through and interact with Ontario’s health and community care systems.

Our past work, which focused on improving the experiences for patients and family caregivers as they move about Ontario’s health care system, led us to the vital yet often unrecognized role of informal or family caregivers in the system. As an independent health policy think-tank that works to inform positive change in Ontario’s health care system, we’ve been able to identify what some of the most pressing needs are, and we were happy to travel to Dublin with these ideas, and an open mind, in tow.

We presented together at the Making Patient and Carer Engagement Happen workshop, where we focused on the importance of co-design in developing integrated systems of care, the value and impact of patient and caregiver involvement, and the Changing CARE projects.

As a conference with a Patient Included Charter Status, by definition, patients and caregivers were actively involved in the design and planning of the conference, as well as participating as attendees and speakers.

For example, Liz Maddox, a caregiver, shared her experience, and described how she and her husband started a support group in their rural community. They had eight people attend their first meeting, and they now have nearly 80. She spoke about the importance of peer support, and commented that she was “empowered by what I hear today.” In particular, she was inspired by the work of The Change Foundation, and felt that our approach reflects what’s important to her. For us, this confirms that our work is focused on what’s important to caregivers.

Jodeme was also honoured to chair a workshop on Strengthening Family Caregivers on behalf of the Foundation, and play a role in advancing this agenda on the international stage. Being asked to facilitate this type of global discussion is a clear indication of the international recognition of the role and profile of the Foundation.

A highlight was the Care Alliance Ireland presentation on their partnership with the Health Services Executive, Family Carers Ireland and the InterRAI team to improve the carer assessment in the InterRAI assessment tool. Eight countries are involved and 50 caregivers from each country are providing input on the design of the draft questionnaire. The goal is to roll out the carer assessment of this tool internationally. 

We were proud to have the opportunity to serve as a model for others overseas. Just as importantly, we embraced the opportunity to learn from others and bring some ideas home with us, to keep The Change Foundation at the forefront of integration issues in Ontario. It’s by joining this type of community that we’re able to keep learning and growing, and keep improving the caregiver experience. We look forward to future collaborations with IFIC and its colleagues around the world.

Changing CARE is an initiative in which The Change Foundation partners with health care organizations and family caregivers to improve experiences and strengthen Ontario’s health and community care systems.

The International Foundation for Integrated Care is a not-for-profit educational membership-based network that crosses organizational and professional boundaries to bring people together to advance the science, knowledge and adoption of integrated care policy and practice.

Charting a New PATH

Partners Advancing Transitions in Healthcare (PATH) was a truly groundbreaking initiative for The Change Foundation (TCF) and for the health care community in Ontario. PATH was one of two showcase engagement projects that formed the basis of TCF’s work and learnings between 2010 and 2015, based on our Hearing the Stories. Changing the Story. strategic plan.

Developed in partnership with the west Northumberland community, PATH was a made-in-Ontario patient engagement project that aimed to create an environment conducive for patient engagement at every level of the local health care system. This meant working alongside and truly integrating patients and family caregivers into the west Northumberland health care fabric. This work couldn’t have been done without the many volunteers and committed organizations in west Northumberland. To them, we say thank you.

Charting a New PATH is a three-part report that describes what TCF has learned as participants in, and funder of, the PATH project. The reports describe the process of developing the PATH proposal and overall project, and the overall lessons we learned working with patients, family caregivers, and providers throughout the project. We have reflected on the major achievements, the unexpected opportunities, as well as which of our ambitions weren’t fully realized. PATH was an extreme learning and growing opportunity, and it’s in that spirit that we present our findings.

We believe our reflections on commentary can help inform the work of others in the health care sector who are currently carrying out patient engagement activities in their organizations, communities, or regions.

Reports and Related Products

PATH Project Partners

In addition to the seniors and family caregivers involved in the PATH project, The Change Foundation also acknowledges the important work of the 12 project partners involved in PATH.

Central East Community Care Access Centre Northumberland Hills Hospital (NHH)
Central East Local Health Integration Network NHH Community Mental health Services
Community Care Northumberland Northumberland YMCA
Golden Plough Lodge (long term care home) Palisade Gardens Retirement Residence
Health Systems Performance Research Network Patients Canada
Northumberland Family Health Team QoC Health

 

For more information, please contact:

Communications at info@changefoundation.com

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.

Their Experience. Our Story. Highlights from Our 2010-2015 Strategic Plan

This 23 page report highlights key achievements arising from our 2010-15 strategic plan, Hearing the Stories, Changing the Story.

As a think thank that does, we took action to contribute to the knowledge in the area of patient engagement and respond to the evolving discussion in health care. We invested in two showcase projects – the Partners Advancing Transitions in Healthcare (PATH) project and PANORAMA – both deep partnerships with patients and caregivers to help shift policy, practice, debate. Take a trip back too, over our signature events, key reports that have helped influence Ontario’s health care landscape.

As we wrap up our five year Strategic Plan and celebrate our 20th Anniversary, we will share our big lessons and learnings and hope to influence your story.

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.

The Change Foundation’s Journey into the World of Patient Experience

In The Change Foundation’s Journey Into the World of Patient Experience, CEO Cathy Fooks provides high-level reflections on our  2010–2013 strategic journey, focusing on the lived experiences of patients and caregivers to drive system change. She says, “We decided we’d better listen to patients – maybe it would change how we saw the world of Ontario healthcare. We did listen. And it did.”

Our 2011  Loud and Clear consultations crystallized the difficulties seniors with chronic conditions have encountered in navigating the system. Fooks’s reflections outline how those consultations and subsequent research, policy analysis and patient engagement work led us to develop two signature projects, launched in 2012: Northumberland PATH and PANORAMA.

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