Around the Globe

Assessing the Scope of Patient Engagement in Canada
Judith Glennie
JL Glennie Consulting Inc.

he June 2016 Global Forum featured an overview of patient engagement in the Canadian regulatory and market access environment, focusing on Health Canada and health technology assessment (HTA) processes.

Patient engagement opportunities have also been evolving in other facets of the Canadian health ecosystem, particularly in the health system and research environments. The following outlines some of the key patient engagement initiatives underway through various Canadian health-related organizations and is intended to provide a taste of the breadth, depth, and best practices related to patient engagement initiatives.

Regulatory Engagement

Ontario Citizens’ Council
The Ontario Citizens’ Council was established in 2009 as part of the Ontario government’s plan to reform the drug system and its commitment to meaningfully engage the public in an ongoing basis in healthcare policy making. The Council consists of 25 members from all walks of life who meet to discuss and share their values and opinions to reflect the Ontario citizens’ needs, culture, and attitudes regarding challenging decisions that must be made on drug funding policies.

The Council provides a mechanism for citizens to provide advice and input into drug policies and priorities to ensure that they reflect the needs, culture, and attitudes of Ontario’s citizens. The Council’s advice helps the government to understand what their citizens value and consider important. In turn, these insights inform decision-making as the government seeks to ensure the responsible delivery of care.

More specifically, the mandate of the Citizens’ Council is to discuss and respond to specific questions or topics posed by the Executive Officer of the Drugs and Devices Division in the Ontario Ministry of Health. For example, the Council delivered a report on a series of questions related to the funding of drugs for rare diseases in February 2018. After each deliberative discussion, the Council develops a report that captures the opinions of Council members as they consider the question or topic at hand.

This report is presented to the Minister of Health and the Executive Officer and made publicly available. In addition, the Executive Officer provides a response to the report outlining how the Ministry will use the recommendations. Both the Council’s Report and the Executive Officer’s response are published on the Government of Ontario’s website. This promotes transparency and accountability, allowing all stakeholders to learn about the views and values formed during the deliberative process.

Health Systems Engagement

Canadian Foundation for Healthcare Improvement
The mandate of the Canadian Foundation for Healthcare Improvement (CFHI), a not-for-profit organization funded by Health Canada, is to support health system partners accelerate the identification, spread, and scale of proven healthcare innovations to achieve measurable improvements in patient care, health outcomes, and value for money.

CFHI has a long history of collaborating with healthcare leaders working in organizations across the country. It has recently increased its emphasis on patient and family engagement initiatives, recognizing the key role of these stakeholders in healthcare delivery. Specifically, CFHI is supporting initiatives that engage patients and families in designing, delivering, and evaluating health services with the goal of improving quality across the continuum of care.

Examples of how CFHI has fostered patient and caregiver engagement in the health system:

  • Spearheading the Better Together campaign, which called on hospitals and healthcare delivery organizations across Canada to implement family presence policies as an important step toward delivering more patient- and family-centered care, where families are recognized as allies for quality and safety.
  • Creating a Patient Engagement Resource Hub which provides Canadian and international open source tools and other patient and family engagement resources to improve health and healthcare.
  • Creating educational opportunities on enabling patient engagement in challenging times, such as their recent webinar series Patient Partnership in a Time of COVID-19, which focused a patient partnership lens on specific issues, policies, and practices that are being rapidly developed and implemented in response to COVID-19 and their impact on patients, families, and caregivers.

Health Systems Engagement

Ontario Health Patient and Family Advisors Network
In March 2019, Ontario created a new agency, Ontario Health (OH), as part of the government’s efforts to reduce patient wait lists and to improve access to healthcare services and the patient experience. The agency is a central point of accountability and oversight for the healthcare system that serves Ontario’s 14 million citizens.

As part of the launch of OH, a Patient and Family Advisors Network was established. This Network functions on a virtual basis, not as a defined committee, and welcomes involvement by anyone who uses healthcare services in Ontario. OH has been recruiting people from diverse backgrounds to join the network—patients, clients, and residents in long-term care as well as their caregivers, friends, and family members—to help the agency better understand the unique needs of the people using the healthcare system.

The vision is to leverage this Network by connecting participants with other patient and family advisors across the province to help spread innovation in healthcare through collaboration and partnership. The Network is early in its lifecycle and hopefully the impact of this innovative way of getting input and insights will be evaluated and shared broadly with all stakeholders.

Health Systems Engagement

Health Quality Ontario
Health Quality Ontario (HQO) is the provincial lead on the quality of healthcare and is part of the broader Ontario Health agency. Its mandate is to help make healthcare more effective, efficient, and affordable by enabling healthcare professionals to be as effective as possible in what they do through providing objective advice and data, and by supporting these professionals and the government in improving healthcare for the province.

HQO’s legislative mandate focuses on three areas:

  1. Health system performance reporting to the public, organizations, government, and healthcare providers
  2. Sourcing and collating evidence of best practices
  3. Translating evidence into clinical standards, recommendations to healthcare professionals and funders, and tools that healthcare providers can put into practice to make improvements.

HQO has established a Patient, Family, and Public Advisors Council intended to ensure that HQO’s work and strategic priorities are guided by Ontarians’ lived experiences. The council consists of 24 members from across the province, who bring unique and diverse perspectives based on their health system experiences. Members are tasked with giving advice and insights into what quality healthcare looks like, providing input into issues such as transitions in care, long-term care, and advancing best practices for patient and public engagement across the province. Members make a long-term commitment to the Council (three-year term), and regular meetings (four to six times per year) ensure their ongoing and timely engagement with the organization.

Research Engagement

Canadian Strategy for Patient-Oriented Research
The Canadian Institutes of Health Research (CIHR) is a national research organization that spearheads the Canadian Strategy for Patient-Oriented Research (SPOR). SPOR focuses on moving what health researchers know into what healthcare providers do. Specifically, it is focused on providing evidence to inform health policies and healthcare system innovation, especially on knowledge transfer to support translation of scientific discoveries to the bedside as well as information transfer for decision-makers and healthcare providers to improve care.

SPOR strives to facilitate patient-oriented research by creating environments that are conducive to this approach and work across the country, directly funding research, and enabling synergies between patients, partners, researchers, healthcare providers, and policy makers. SPOR seeks to engage patients, their caregivers, and families as partners in the research process to ensure that studies focus on patient-identified priorities, which ultimately leads to better patient outcomes. The role of patient is as a proactive partner who helps shape health research and, as a result, healthcare.

SPOR fosters high level of patient and stakeholder engagement by ensuring that funded research initiatives follow several key principles:

  • Patient involvement in all aspects of research to ensure questions and results are relevant
  • Decision-makers and clinician involvement throughout the entire research process to ensure integration into policy and practice
  • Using a matching funding approach with non-federal government partners to ensure relevance and applicability
  • Mandating a multidisciplinary approach to ensure effective patient-oriented research
  • Incorporating performance measurement and evaluation into its work to ensure that research outputs are relevant and useful to stakeholders.

Research Engagement

Canadian Real World Evidence for Value of Cancer Drugs
The Canadian Real World Evidence for Value of Cancer Drugs (CanREValue) is a CIHR-funded research initiative focused on developing and testing a framework for Canadian provinces to generate and use real world evidence (RWE) for cancer drug funding decisions in a consistent and integrated manner. CanREValue is a collaborative effort involving researchers, evidence advisory bodies, decision-makers, payers, and patients and caregivers.

The work of this group is executed through five formal working groups (WGs), each of which has a focus on specific issues or processes in the generation and use of RWE for cancer drug funding decisions in Canada. CanREValue has deliberately created a standalone Engagement WG to support the overall project, recognizing that the development and implementation of the RWE framework will require comprehensive collaboration and discussion among various key stakeholders.

The mandate of the Engagement WG is to ensure that all key stakeholders are given a voice in the development and implementation of the RWE framework. It consists of individuals with perspectives from HTA organizations, provincial cancer agencies, patients, clinicians, and researchers who have a network of connections, expertise, and experiences in communicating with various stakeholders. The goal of the overall engagement strategy is to ensure that development of this RWE framework is an inclusive process, which will help ensure that final framework recommendations are supported and adopted.

Research Engagement

Ontario Drug Policy Research Network
The Ontario Drug Policy Research Network (ODPRN) is a collaboration of established researchers throughout Ontario originally established in 2008 as a “rapid response” group to support policymakers’ needs for relevant research to guide and inform their decisions. The group focused on generating rigorous evidence related to real world drug utilization, safety, effectiveness, and costs of drugs in Ontario, and also engages in cross-provincial comparisons of drug safety and utilization with research partners across the country.

ODPRN research integrates not only the needs and perspectives of policy makers but also those of other stakeholders, including patients and the general public. Beyond involvement of stakeholders in individual research projects, the ODPRN has also established a Citizens’ Panel to inform its work. The Panel consists of 20 volunteer citizens from across Ontario who work with ODPRN to ensure that they appropriately identify issues of importance to the public and incorporate these priorities into all aspects of its research.

The following are key attributes of the Citizens’ Panel, representing important best practices in stakeholder engagement:

  • Membership of the Panel is transparent – It is important that the citizens of Ontario know who is representing their interests.
  • Members receive training to enable their participation – A two-day workshop helps define their role, structure, and governance.
  • Their involvement in ODPRN’s work is planned rather than ad hoc – The Panel meets bi-monthly by teleconference and annually in person to provide their input on current research projects and deliverables.
  • Members are encouraged to identify their own priority research areas – One example is the ODPRN’s Landscape of Prescription Stimulant Use report.
  • Integration on research teams – Individual members work on specific projects of interest throughout all stages of the research process and are formally acknowledged on published material.

What Is the Future of Patient Engagement?

The scope of patient engagement initiatives in Canada has broadened over time. We now have an opportunity to look more holistically at our experience to date, with an eye to sharing learnings amongst various facets of the health sector. This may help expand integration of patient engagement across the health ecosystem.

While there is no argument against the potential value of the aforementioned patient engagement initiatives, there has also been no systematic evaluation of their “success.” Research into, and evaluation and documentation of, the value of engagement remains critical. This will help expand these practices beyond these examples so that patient engagement can become a “routine” part of the way we do business within the health system. It is critical that patients be an integral part of such research and evaluation to ensure that their perspective contributes to, and is assessed as, part of this learning process.