From the Editors.

It will take years before we can understand and measure the full toll that the COVID-19 pandemic has taken on our health systems. Of the many reverberations from the pandemic, one of the most concerning implications is an increase in the rates of preventable harm. Four years of unprecedented demand on healthcare services combined with health human resource shortages and clinician burnout have pushed our systems to the brink - and are impacting our capacity to improve or even maintain standards of care.

Just a story? Leadership, lived experience and integrated care.

BACKGROUND: Integrated care is based around values of involvement and shared decision-making, but these are not often reflected within planning and implementation. Barriers include continued emphasis on professional and managerial perspectives, skills gaps on how best to engage people and communities and insufficient investment in involvement infrastructure. Despite such challenges, people with lived experience have still led changes in policy and services. DESIGN: Qualitative study involving 25 participants with lived experience from 12 countries. Participants shared their background stories and engaged in semistructured interviews relating to leadership identity, experience of influencing and personal learning. Transcripts were analysed through a framework approach informed by narrative principles. RESULTS: Participants were motivated by their own experiences and a wish to improve care for future individuals and communities. Sharing their story was often the entry point for such influencing. Participants gained skills and confidence in story telling despite a lack of support and development. Many felt comfortable being described as a leader while others rejected this identity and preferred a different title. No common alternative term to leader was identified. Influencing services required considerable personal cost but also led to new networks, skills development and satisfaction when change was achieved. DISCUSSION: Leadership within integrated care is often awarded to those with structural power related to management or clinical seniority. People with lived experience are though uniquely placed to identify what needs to change and can develop inspiring visions based around their personal stories. Claiming identity as leader can be challenging due to traditional notions of who is eligible to lead and unwillingness by professionals and managers to grant such identity. CONCLUSIONS: People with lived experience should be recognised as leaders of integrated care and have access to developmental opportunities and practical support to strengthen their skills, including that of storytelling. PATIENT AND PUBLIC CONTRIBUTION: The research was instigated on the request of a community advisory board of people with lived experience who shaped its design, contributed to the analysis and informed the conclusions and implications.

From the Editors.

There is no doubt that 2023 was a very difficult year for many Canadians, as well as people across the world. War caused massive upheaval globally, inflation continued to impose financial hardship on families and our health systems experienced another brutal respiratory season while still in recovery from the COVID-19 pandemic. Unfortunately, the year ahead is likely to bring more political and economic uncertainty, although we hope it also brings with it some opportunities for our health system, including the use of artificial intelligence (AI), research advancements and system transformation initiatives.

From the Editors.

Some of us may recall a time in healthcare when it seemed that the summer months were a bit quieter, providing an opportunity to catch our breath before the onslaught of fall and the ramp-up to flu season. Yet, with the increasing demand on our health systems, the sense of downtime has all but disappeared. This may suggest that we collectively have less time available for review, reflection and learning - all of which are critical elements for improvement and transformation. As an editorial team, our contribution is to continue synthesizing and presenting leading practices and innovative concepts to our readers, enabling them to access knowledge and ideas more easily. It is how we can help build capacity in our system to deliver better healthcare at a time when renewal is needed more than ever.

Builder, Expert, Disruptor, Leader: The Many Roles of People with Lived Experience.

People with lived experience of health and social care, including family carers, should be at the heart of integrated care policy and practice. One of the challenges to achieving such co-production is insufficient clarity and limited understanding of the different roles that people with lived experience are asked or choose to undertake. Following research and workshops, four roles have been identified - community builder, improvement expert, disruptor/advocate, and citizen leader. Recognising the distinct contribution and demands of these roles will enable appropriate support and development for people with lived experience and the professionals and managers with whom they collaborate.

From the Editors.

As we consider the current pressures on healthcare, the options for where to focus our policy and leadership efforts are numerous and, at times, overwhelming. From health human resources capacity to access to mental health and preventative care to intermittent closures of emergency departments - the outlook is alarming. To help make sense of the situation, our Healthcare Quarterly (HQ) editorial team carefully considers a few areas to focus on in each edition. Over the past few issues, we have highlighted the importance of health equity and the challenges faced by different populations in gaining access to appropriate care and support. We continue to welcome submissions on this topic as we start to shift our focus toward other system priorities, including the mental health crisis in Canada. We are currently exploring a special focus edition on this long-neglected area of the health system and will be inviting submissions on this topic over the coming months.

Evaluating an Integrated Local System Response to the COVID-19 Pandemic: Case Study of East Toronto Health Partners.

Introduction: East Toronto Health Partners (ETHP) is a network of organizations that serve residents of East Toronto, Ontario, Canada. ETHP is a newly formed integrated model of care in which hospital, primary care, community providers and patients/families work together to improve population health. We describe and evaluate the evolution of this emerging integrated care system as it responded to a global health crisis. Description: This paper begins by describing ETHP's pandemic response mapping out over two years of data. To evaluate the response, semi-structured interviews were conducted with 30 decision makers, clinicians, staff, and volunteers who were part of the response. The interviews were thematically analyzed, and emergent themes mapped onto the nine pillars of integrated care. Discussion: The ETHP pandemic response evolved rapidly. Early siloed responses gave way to collaborative efforts and equity emerged as a central priority. New alliances formed, resources were shared, leaders emerged, and community members stepped forward to contribute. Interviewees identified positives as well as many opportunities for improvement post-pandemic. Conclusion: The pandemic was a catalyst for change in East Toronto that accelerated existing initiatives to achieve integrated care. The East Toronto experience may serve as a useful guide for other emerging integrated care systems.

From the Editors.

The recent winter months were particularly brutal for the healthcare system and its patients as we grappled with an onslaught of infectious diseases, healthcare backlogs and critical shortages of health human resources. We subsequently watched as Canada's federal and provincial leaders sought agreement on additional investments for several of our most precarious sectors, including long-term care, primary care and mental healthcare. Spring 2023 offers some optimism in that we will have new resources to make much-needed improvements to our depleted health sectors and services. While we can anticipate ongoing tensions as to how these investments will be used and how political leaders are held accountable, our healthcare leaders are gearing up to increase capacity and shore up our systems.

Shadows and Light: An Interview with Heather Patterson.

The editors of Healthcare Quarterly (HQ) recently had the opportunity to speak with Heather Patterson - emergency physician, photographer and author of the recently released book Shadows and Light (Patterson 2022). Through the photographs she took at Calgary-area hospitals during the height of the COVID-19 pandemic, Patterson created a poignant record of how the pandemic affected hospital staff, patients and their families. The book has struck a chord with many Canadians as it offers both an honest appraisal of the dreadful toll of the pandemic while also demonstrating the grace and compassion of healthcare workers.

From the Editors.

As we launch into 2023, the third year of the COVID-19 pandemic, the state of Canadian healthcare remains deeply concerning. Over the fall and winter months, our systems have experienced crippling levels of hospitalizations due to waves of infectious diseases, including influenza, respiratory syncytial virus infection and COVID-19. We have been particularly distressed by the impact to paediatric care, the insufficient capacity in mental health services and the continued strain on our healthcare workforce as well as on patients and families.

From the Editors.

It would be a vast understatement to say that our healthcare systems are facing extraordinary pressure. The COVID-19 pandemic has pushed our people and our systems to their limits. We observe with trepidation that the current state of healthcare has not looked more precarious at any time in recent memory. Patients and families are feeling it. Providers, clinicians and leaders in the system are feeling it. And all of us recognize that it will take incredible political will and system-wide commitment to make the changes that are needed to renew and strengthen our front-line teams, structures and capacity. As editors for Healthcare Quarterly (HQ), we see the opportunity to contribute to the daunting task ahead by shining a light on leading practices and lessons learned from implementing change across Canada and beyond. Our commitment is to continue to showcase healthcare leadership in all forms and share opportunities for post-pandemic recovery and the future of healthcare.

From the Editors.

Although we do not yet know how or when the story of COVID-19 ends, Canadians are welcoming the summer of 2022 with the anticipation of the first prolonged period of near normalcy in two-and-a-half years. This sense of renewal coincides with the start of our roles as the new co-editors-in-chief of Healthcare Quarterly (HQ). Building on HQ's 25 years of excellence in sharing leading practices in health services delivery and policy, we are looking forward to taking the journal in new directions. Although both of us of have had long careers in healthcare and have experienced many cycles of change, this particular point in time feels different. Despite the devastating aftermath of this global pandemic, the disruption comes with an extraordinary level of opportunity. It is in thinking about the future state that we have embraced our new leadership roles with HQ.

The Growing Imperative for Patient and Caregiver Partnership.

This special edition of Healthcare Quarterly (HQ) has been developed through a novel partnership between the Ontario Strategy for Patient-Oriented Research (SPOR) SUPPORT Unit (OSSU) and Longwoods Publishing. The concept for this edition emerged from an alignment of interests between the partners. OSSU's mandate is to support patient-oriented health and health services research in Ontario and to facilitate the uptake of research evidence to improve health policy and decision making. HQ's mission is to recognize, nurture and champion excellence in the Canadian healthcare system by sharing leading practices in health services delivery and policy development. As we look toward the future of healthcare and health system transformation, leading practices will be increasingly defined by the degree to which they are designed and implemented in full partnership with patients and caregivers. This perspective, shared by both OSSU and Longwoods, is at the heart of this publication.

Resetting the Future of Healthcare Leadership.

There is no doubt that the events of the past two years will leave an indelible mark on human history. The tragic loss of so many lives during the COVID-19 pandemic, the long-term health and psychological impacts for many more and the economic and societal changes will reverberate for years to come. While the pandemic is not yet over, we are starting to appreciate how different our new future looks and feels. It is within this context that Longwoods Publishing and the Canadian College of Health Leaders (CCHL) have collaborated, for the first time, in a shared reflection on the future of leadership in Canada's healthcare system.

Leadership Perspective: Addressing Canada's Opioid Crisis - Reducing the Harm of Leadership.

While the COVID-19 pandemic has been the major focus for healthcare leaders since early 2020, the opioid crisis has been growing in the background. Confronting this emerging problem will require new thinking. Guest editors Anne Wojtak and Neil Stuart spoke with Scott Elliott, executive director, and Patrick McDougall, director of Knowledge Translation and Evaluation, at the Dr. Peter AIDS Foundation in Vancouver to gain their insights into how leaders can respond effectively.

Leadership Perspective: Partnering with Patients to Co-Design Healthcare Systems.

The ability to partner with patients to design healthcare systems is an increasingly critical skill for healthcare leaders. Guest editors Anne Wojtak and Neil Stuart spoke with Vincent Dumez, co-director of the Montreal-based Centre of Excellence on Partnership with Patients and the Public, to gain an understanding of what true patient partnership looks like and how healthcare system design can be transformed.

Mobilizing a Whole Community: Policy and Strategy Implications of an Integrated Local System Response to a Global Health Crisis.

The East Toronto Health Partners (ETHP) include more than 50 organizations working collaboratively to create an integrated system of care in the east end of Toronto. This existing partnership proved invaluable as a platform for a rapid, coordinated local response to the COVID-19 pandemic. Months after the first wave of the pandemic began, with the daily numbers of COVID-19 cases finally starting to decline, leaders from ETHP provided preliminary reflections on two critical questions: (1) How were existing integration efforts leveraged to mobilize a response during the COVID-19 crisis? and (2) How can the response to the initial wave of COVID-19 be leveraged to further accelerate integration and better address subsequent waves and system improvements once the pandemic abates?

Patient and Family-Centred Home and Community Care: Realizing the Opportunity.

As jurisdictions around the world transform their healthcare systems, the home and community care sector represents both a significant challenge and a critical opportunity for the future. One of the biggest challenges is that home and community care lags behind hospitals and primary care in most health systems in funding, policy, and infrastructure. At the same time, home and community care is an ideal foundation for a health system which is patient and family-centred and provides care options that are delivered closer to home. This article builds on the patient-centred care concepts in an article by Sharkey and Lefebvre (2017) and identifies how nurses can lead the way to health system transformation by working with patients and families to co-design changes to achieve a higher quality, more integrated and patient-centred home and community care system.

Contributing causes to adverse events in home care and potential interventions to reduce their incidence.

The increasing complexity of home care services, pressures to discharge patients quicker, and the growing vulnerabilities of home care clients all contribute to adverse events in home care. In this article, home care staff in six programs analyzed 27 fall- and medication-related events. Classification of contributing causes indicates that patient and environmental factors were common in fall events, while organization and management factors along with patient, task, team, and individual factors were common in medication-related events. Home care settings create specific challenges in identifying and mitigating risks. Some factors, such as variations in home environments, are difficult to address. However, changing care coordination structures and communication methods could ameliorate other factors, including poor communications among staff and limited team and cross-sector communication and coordination. Ensuring that medication ordering and administration processes are optimized for home environments would also contribute to safer care.

Predictors of Caregiver Distress in the Community Setting Using the Home Care Version of the Resident Assessment Instrument.

PURPOSE OF STUDY: The purpose of this study was to identify factors predictive of new onset and improved caregiver distress among informal caregivers providing assistance for clients receiving home care. PRIMARY PRACTICE SETTINGS: Home care. METHODOLOGY AND SAMPLE: The sample included 323,409 clients receiving home care from a Community Care Access Centre between March 2002 and March 2015 for whom data were available from two subsequent Resident Assessment Instrument-Home Care (RAI-HC) assessments. Separate multivariate logistic regression models were created for onset of and improvement in caregiver distress. RESULTS: Variables that increase the odds in onset of caregiver distress included primary caregiver is not satisfied with support received from family and friends; client lives with primary caregiver; 65 years and older; has Alzheimer and other related dementia; has condition or disease that makes cognition, activities of daily living, mood, or behavior patterns unstable; took sedatives in the last 7 days; Method for Assigning Priority Levels (MAPLe) score 4 or more; demonstrates persistent anger; has difficulty using the telephone; is married; requires 20 hr or more of informal help weekly; and Clinical Risk Scale score 4 or more. Variables that increased the odds of improved caregiver distress include client now lives with other persons (as compared with 90 days ago); demonstrates good prospects for recovery; treatment changes in last 30 days; surgical wound; female; one or more hospital visits in last 90 days; greater number of months between RAI-HC assessments; and two or more hours of physical activities in the last 3 days. Variables that decreased the odds of improved caregiver distress (i.e., persistent distress) include MAPLe score 4 or more; persistent anger; difficulty using telephone; Alzheimer, related dementia; requires interpreter; and lives with primary caregiver. IMPLICATIONS FOR CASE MANAGEMENT PRACTICE: Informal caregivers provide essential support for home care clients. Factors predictive of new onset and improved caregiver distress can be used by case managers for comprehensive care planning that addresses the collective needs of the client-caregiver dyad.