Encompassing Cancer Care Ontario and the Ontario Renal Network CCO is the Ontario government’s principal advisor on the cancer and renal health care systems, as well as on access to care for key health services. Our mission is to work together with our many partners to improve the performance of our health systems, by driving quality, accountability, innovation and value. CCO drives continuous improvement in disease prevention and screening, the delivery of care and the patient experience for chronic diseases. We provide tools, resources and evidence-based data to help our healthcare partners improve the delivery of care. CCO is governed by The Cancer Act and is accountable to the Ministry of Health and Long-Term Care.
In recent years, the person-centred approach to care has become a central aspect of cancer services. An important component of the work we do at CCO is patient engagement, a key pillar of the person-centered care portfolio. Since 2011, CCO’s Patient Engagement Program has actively worked with a continually growing community of Patient and Family Advisors (PFAs) -- comprised of patients, families, caregivers and members of the public -- to embed them across all areas of work and decision making. The job of our community of advisors is to ensure that the actual experience of patients, families and caregivers who have had contact with the cancer and renal health care systems are considered when decisions are made. By collecting insights from the lived experiences of these individuals and ensuring that their feedback is used in the planning, delivery and evaluation of services, CCO aims to build a system that is equally safe and effective for all Ontarians.
Cancer Care Ontario has now developed a widely respected patient engagement network across the province and patients are a routine part of almost all the work we do.However, despite its visible growth, patient engagement has not been realized in a manner proportionate to and reflective of Ontarians across all populations. Instead, a number of groups continue to remain under-engaged or never-engaged. This is problematic as it limits the number of voices being heard as well as the breadth and type of feedback that is actually used in the planning and delivery of services. As such, one of the Patient Engagement Program’s focuses this year has been to improve equity by assessing which populations are presently engaged in our work and which ones are not. The ultimate goals of this work are to identify the makeup of our existing PFA community, ensure that our PFA community mirrors Ontario’s population, increase CCO’s internal capacity to engage the public in an equitable fashion and improve CCO’s overall ability to reach under-engaged patients.
To initiate this work, the Patient Engagement Program commenced by developing the Advisor Health Equity Survey and used it to collect socio-demographic and other health data from members of the active PFA community. The results showed that certain demographics are indeed over-represented, while others, are significantly under-represented. Specifically, when compared to the population of Ontario, CCO’s PFA community is on average comprised of individuals who identify as female, are born in Canada, are older than 50, have achieved a post-secondary degree or higher and are part of a higher socio-economic bracket. These results prompted us to undertake building a framework for equitable engagement that would allow us to bridge these gaps as well as shape overall corporate capacity to sustain long-term equitable engagement.
We are now in the midst of piloting this framework with three prioritized groups, namely the Lesbian, Gay, Bisexual, Transgender, Queer (LGBTQ) community, youth and newcomers to Canada. Our ultimate goal is to develop a comprehensive engagement model that augments contemporary patient and family engagement strategies and practices to ensure that truly represents the voice of Ontarians in our work.
In your practice working at the community, hospital or system level, does CCO’s experience reflect some of the challenges you’ve encountered with engaging a diverse array of stakeholders? What strategies have you or your organization used to bridge these gaps and ensure that the voices reflect all Ontarians?