5.2 LESSON2. (re)IMAGINING PATIENT PARTNERSHIPS and care

Health disparities and social determinants of health have profoundly and unevenly impacted COVID19 morbidity and mortality. Health disparities and social determinants of health, including poverty, physical environment (smoke exposure, homelessness) and race and ethnicity25 have had a considerable impact on COVID19 outcomes.26 Social distancing and quarantine measures have had a disproportionate impact on people with lower socioeconomic status, who may have less access to resources for remote work or education, and less ability to stock up on food and supplies. This has spurred efforts to improve patient partnership models in healthcare, demonstrating the value of applying a healthy equity lens to engage at risk communities, communicate with them effectively, share data, and partner with them for program implementation, dissemination, and evaluation.27 

Examples of engagement across diverse communities, community organizations, and local health departments, hospitals, and universities applied during the pandemic highlight the opportunity to apply lessons learned for sustained changes in how public health and its partners, which includes patient experts (patients with lived experience of the disease), patient organizations, and advocacy groups, can work collectively to prevent disease and promote health for all. 

Patient and caregiver engagement in care and program planning is fundamental to person centered care, however the resources, skills, views, priorities and preferences of patients, carers and the communities which support them are not well recognized, valued, or systematically used to improve care. Patient engagement and partnerships in both research and policy creation has proven itself to be crucial, and innovative ways are needed to meaningfully engage and nurture relationships for successful long term patient partnerships in cancer care.28

The pandemic has accelerated the need for patient centered and community based models of care that prioritize collaboration, communication, and partnership in improving health outcomes beyond tokenism. Evolving from the patient engagement movement to include more collaborative partnership models in addition to traditional consultation roles. These partnership roles should aim to place patients on an equal footing with healthcare professionals, researchers, managers and policymakers and include patients, family and caregivers formally contributing to all facets of the health system including the training of healthcare professionals, health research, policy making and regulation.29 

As well as the under recognized value of patient partnerships, a lack of consistent terminology for patient engagement and partnerships has added an additional barrier to their effective implementation. The terms patient involvement, engagement and partnerships are often used interchangeably, and their definitions can vary depending on the context. This inconsistency can lead to confusion among healthcare providers, patients, and policymakers about the roles and expectations of patients in healthcare. Furthermore, inconsistent terminology can make it difficult to compare and evaluate the effectiveness of patient engagement and patient partnership initiatives across different healthcare systems and organizations. To overcome these challenges, it is important to establish clear and consistent definitions for patient engagement and patient partnerships that are widely accepted and adopted across the healthcare industry. This will help ensure that patient engagement and patient partnership initiatives are effectively implemented and evaluated to improve the quality of care and support for patients.

While the healthcare industry has recognized the need for patient centered care and the importance of involving patients in care decision making processes, there continues to be a lack of knowledge and understanding of how to effectively partner with patients to improve health systems. This lack of ‘know how’ in engaging and partnering with patients, has led to a disconnect between health systems, policymakers and patients, resulting in policies and systems that fall short. It is essential for stakeholders to develop the necessary skills to engage and partner with patients meaningfully, if patient centric care is really at the heart of healthcare.

Patient engagement and partnerships are more than just any one project or program. It is about culture change, where patient engagement is more than an expectation, it is innate and an instinct, rather than the exception. This culture change balances the power dynamics between providers and patients and fully recognizes and appreciates the expertise of lived experience that patients, families and caregivers bring as true partners in healthcare.30

The pandemic has shown us the potential of collaboration between scientists, policymakers, and the public in ensuring a rapid response to a healthcare crisis. By applying these lessons learned to cancer, working together to promote innovation in cancer care, develop and implement evidence based policies and raise public awareness of the importance of cancer prevention and early detection. This collaborative approach is crucial for improving outcomes for cancer patients but also for building resilient and sustainable healthcare systems to address Canada's healthcare crisis. A strategy that recognizes health system partnerships will be essential in addressing the complex challenges facing healthcare.

Reimagining patient care also requires us to rethink how care is delivered. Hospitals became increasingly preoccupied with treating and caring for patients with COVID19, and in order to not overburden already burdened hospitals, non COVID primary and specialty care services were downscaled or halted, with continuing impact from these backlogs. Consequently, affecting the screening, diagnosis and treatment of cancer causing ongoing pandemic related delays. While the focus has been on hospitals, primary care clinicians, who serve as the gatekeepers to healthcare, have played a vital and multifaceted role in the pandemic response, also ensuring the continuity of care throughout the crisis.  Health systems with strong primary care achieve better health outcomes and improved health equity at lower cost.30A 

Primary care is not only a critical component to our healthcare systems, but also to cancer care delivery. Primary care physicians are often the first point of contact for those presenting with cancer, thus essential in the early detection of cancer. They are also critical in providing wraparound services to those with cancer, in turn reducing healthcare utilization costs and improving patient outcomes. The importance of primary care, while always recognized, has been brought back to the forefront, confronted with the reality that not all Canadians have access to primary care. Results from the OurCare national survey reveals that 6.5M Canadians, or more than one in five, do not have access to a primary care clinician for routine care. Access to primary care is an essential component of a healthcare system, especially during a pandemic, and must be able to meet the challenges of ageing populations, a growing burden of cancer and increasing health conditions. For health systems to be resilient against ongoing health crises beyond COVID19, a strong primary and community health care – the frontline of all health systems – is essential. Prioritizing primary care in a post pandemic world is essential to ensure that all Canadians have access to quality healthcare services.