Building Canada’s Health Information Ecosystem Through Equitable Approaches to Public,Patient,and Community Engagement

Abstract

The Pan-Canadian Health Data Charter (the Charter) provides a strong foundation for Canada’s strategy to building a trustworthy and adaptable health information ecosystem. A key requirement is to ensure that governance mechanisms are informed by the views of the public, raising important questions about what constituencies make up “the public” and what inclusion looks like in practice. In this article, we use health data justice as the theoretical basis to justify the importance of centring equity in inclusionary efforts and outline key considerations for involving diverse members of the public, patients, and communities in advising health information systems and policy. We suggest that engagement should be fit-for-purpose, marrying the methods and selection of participants with overarching goals, and multi-modal, employing multiple methods to facilitate wider participation from individuals with varying needs. We also recognize the importance of long-term partnerships between civil society organizations, policy actors, and researchers to ensure that the needs and preferences of structurally marginalized groups are prioritized in engagement initiatives and downstream policy decisions.

Introduction

In 2023, the Canadian federal, provincial, and territorial governments (except Quebec) affirmed the Pan-Canadian Health Data Charter (herein, the Charter). ¹ The Charter consists of 10 principles which together “honour the duty to put people and populations at the core of all decisions about the disclosure, access, and use of health information.” ¹ One key tenet requires the “inclusion of diverse members of the public, patients, communities, and other partners in culturally integrated health information system development and oversight.” To operationalize this principle, the Pan-Canadian Health Data Charter Expert Advisory Group has suggested multiple approaches to public, patient, and community engagement including regional public assemblies and local public consultations. ² In this piece, we substantiate the need for public, patient, and community engagement for health information system development in Canada and introduce health data justice as a theoretical construct to inform the meaningful inclusion of structurally marginalized groups.

We choose to focus on engagement as one practical method of including the perspectives of diverse groups of the public and other interested parties in developing Canada’s health information systems. We also choose to focus on engagement with the public, patients, and communities in particular as these constituencies are often underrepresented in policy spaces. Though it will not be the focus on this piece, we acknowledge that engagement with other actors, including researchers, clinicians, vendors, innovators, policy-makers, and government representatives will be needed to develop robust health information systems.

When done well, engagement can be a tool of empowerment that recognizes the unique knowledge contributions of patients, publics, and communities and acts to counterbalance the perspectives from technocrats to promote more democratic approaches to policy development, implementation, and oversight. While distinctions between the public, patients, and communities are necessarily blurred, we specify “patients” as members of the public who have specific lived experiences of navigating the healthcare system while living or caring for someone with illness and “communities” as groups that are united by a shared identity, interest, culture, or region (e.g., race, Indigeneity, geography, disability). Engagement with the public, patients, and communities in health information system development and oversight requires thoughtful consideration to promote meaningful involvement and prevent tokenism and community harm; this is where we believe health data justice offers a theoretical anchor for good practice.

Why Engage With the Public, Patients, and Communities?

Engaging with diverse members of the public for complex health and social policy issues can be justified on multiple grounds. Democratic rationales focus on the rights of members of the public to inform policy decisions which implicate their health and well-being.^3,4 These rationales are strengthened by Canada’s single payer healthcare system where healthcare is primarily funded through taxpayer dollars. Instrumental rationales instead focus on the positive impacts of involvement.^5,6 These may include, for example, the creation of policies that are more accountable and acceptable to the public, bolstering trust in public institutions such as healthcare.

Public, patient, and community engagement are especially useful for addressing policy issues that are inherently complex and value-laden, where reasonable people may disagree about the best course of action, where multiple forms of expertise and lived experience need to be considered, and where erosion of public trust is a significant risk. ⁷ As Canada forges new systems for health information management and innovates novel data-intensive health technologies, meaningful and sustained engagement with diverse members of the public will be needed to ensure that public interests remain at the centre of policy experimentation.

The diversity of “the public” in Canada also raises important questions about how to prioritize health equity and fairness in the design of health information systems through meaningful approaches to engagement. What do we mean when we say “the public” and “community”? Who has access to engagement opportunities and who feels empowered to contribute to policy conversations? What methods of engagement are well-suited to engaging a diversity of publics and communities? In this article, we propose health data justice as a centralizing framework that highlights the importance of health equity and fairness when developing health data policies and systems and raises important conditions for the engagement of diverse members of the public, patients, and communities in Canada’s health information ecosystem.

Using Health Data Justice to Anchor Inclusionary Practice

Health data justice is a novel theoretical construct proposed by Shaw and Sekalala that draws on cross-disciplinary scholarly traditions in data justice, social justice, and health justice. ⁸ Health data justice has two key features. First, health data justice is predicated on the equitable participation of groups in healthcare and public health. Injustice arises when certain groups are systematically disadvantaged due to historical or ongoing harms that render such groups unable or unwilling to participate in healthcare and public health systems. ⁸ This can map onto health information systems in multiple ways ranging from inadequate representation of certain groups in health datasets to disproportionate harms from data-dependent health technologies that fail to meet the needs of marginalized groups.^9,10

Second, health data justice is necessarily structural in nature and requires the dismantling of institutional barriers that interfere with the pursuit of social justice. ⁸ This redirects attention from the technical aspects of data-intensive health innovations to the institutions within which such technologies are governed. Health data justice is therefore impossible within governance structures that disempower or marginalize certain groups from realizing the full benefits of health information systems and the health technologies they enable. For instance, colonial structures that take extractive approaches to acquiring health data from communities (especially but not limited to Indigenous communities) is antithetical to health data justice.^11,12 Importantly, this calls for a sociocultural and historical lens when analyzing healthcare and public health systems to understand how and why injustice persists within these settings. ⁸

Overall, a health data justice approach to designing health information systems requires scholars, practitioners, and policy-makers to recognize the exclusionary forces that prevent structurally marginalized communities from safely accessing healthcare and public health systems and make sincere efforts to design governance systems that strive for health equity and social justice. These aims set important conditions for the context and content of public, patient, and community engagement about health information systems in Canada. In particular, a health data justice lens introduces critical considerations for deciding who should organize engagement, who should be engaged, and how individuals should be engaged. In the following section, we address each of these considerations and highlight possible models for engagement that may be particularly fruitful.

Including the Public, Patients, and Communities in Canada’s Health Information Ecosystem

Defining “the Public,” “Patients,” and “Communities”: Who Participates in Engagement?

All engagement initiatives first require a decision about the “who”; in other words, which members of the public, patients, and communities should be engaged? Engagement with the general public or patients specifically may be warranted for health information system development for a variety of reasons. McCoy et al. ¹³ suggest that engagement with the public is desirable when discussing issues that are in broad public interest and where a diversity of perspectives must be considered for decision-making. The citizens’ panel, where a group of individuals from differing social backgrounds come together to deliberate about a particular policy issue, is a valuable method of engagement with the general public. ⁷ This approach is aligned with Pan-Canadian Health Data Strategy Expert Advisory Group’s recommendation that an “ongoing, pan-Canadian public assembly should be established to provide insights and advice to governments on what responsible collection, access, sharing, and use of health data is in the context of Canadian values.” ²

The involvement of patients is recommended when seeking specific lived experiences that patients gain from their interactions with the healthcare and public health system. ¹³ For instance, patients may be able to identify specific barriers in access to care that emerge from the lack of interoperable health information systems. Involving patients throughout the development and implementation of new systems and technologies can help identify novel mechanisms for health data governance that reflect the everyday realities of those navigating the healthcare and public health system. In Canadian health system organizations, patient engagement often takes the form of Patient Family Advisory Councils (PFACs) where an advisory body consisting of patients, family, caregivers, and people with lived experience advise on organizational priorities, programs, and services. ¹⁴ Overall, engaging with diverse members of the public and patients promotes health data justice by supporting equitable participation in healthcare and public health, while also enhancing the perspectives offered by other interest holders including healthcare professionals, researchers, and policy-makers.

Applying a health data justice lens would also necessarily prioritize the involvement of structurally marginalized communities when developing health information systems with the goal of designing and implementing governance mechanisms that promote the welfare of such groups. Communities that may be prioritized for engagement include racialized groups, newcomers to Canada, and members of disability communities, among many others. It is important to recognize that communities, despite coalescing around a shared social identity like race or gender, are intrinsically diverse and consist of people with varying needs. As different systems of oppression (e.g., racism, xenophobia, and ableism) intersect to produce unique experiences of advantage and disadvantage for members of structurally marginalized groups, the content and context of engagement would need to be sensitive and adaptable to the specific group(s) being engaged. Meaningful involvement of structurally marginalized communities will likely require more innovative and transformative approaches to engagement that prioritize community safety and oversight in health information systems.

Who Initiates and Leads Public, Patient, and Community Engagement?

Decisions about the “who” of engagement extend beyond just who participates in engagement, but also who decides how engagement will be structured. In general, the institutions which organize engagement hold a certain amount of power; they set the terms for engagement, make decisions about who to involve, and often decide which issues get prioritized for discussion. ¹⁵ A health data justice lens recognizes that structurally marginalized communities have often experienced harms in the healthcare and public health system, which may lead to these communities having mistrust of healthcare institutions. ⁸ Members of structurally marginalized communities may not want to engage with healthcare institutions, especially if they belong to communities who are over-engaged or if they have failed to see community benefit from engagement.^16,17 In these instances, engagement that is led by community-based organizations that have stronger links with the community and understand community needs may be preferred.

Partnerships between community organizations, health system organizations, and governments can be mutually beneficial and particularly effective for producing actionable, community-relevant insights. For example, the Wellesley Institute and Black Health Alliance partnered with the City of Toronto to develop the Black Community Data Governance Framework for the City of Toronto. ¹⁸ As part of the framework development, the community organizations set up an advisory council with community leaders and representatives, and conducted eight focus groups with 31 individuals including members of Black communities in Toronto and representatives from organizations serving Black communities. The City of Toronto supported this work by providing necessary funding, showcasing how institutions can enable and benefit from community-led work. ¹⁸ Importantly, governments and health system organizations may need to invest significant time to build long-term, reciprocal, trusted relationships with community organizations.

Community-led models for health information system governance and oversight can promote safety when partnering with communities that have experienced significant harms due to colonial and extractive practices in healthcare and public health. The Charter affirms a “commitment to support First Nations, Inuit, and Métis data sovereignty and Indigenous-led governance frameworks” necessitating thoughtful engagement with Indigenous communities through approaches that align with community values and ways of knowing. For instance, the Ownership, Control, Access, and Possession (OCAP) principles require that First Nations have ownership and control over how data are collected and used and provide a useful framework for policy-makers seeking to work with First Nations. Sabeti et al. ¹⁹ describe the process of using OCAP principles to develop an overdose surveillance system to measure rates of overdose among First Nations in British Columbia. The First Nations Health Authority (FNHA), BC Centre for Disease Control, Public Health Office, and Ministry of Health worked in partnership to implement the OCAP principles in the surveillance system. This helped ensure that First Nations perspectives were prioritized throughout the creation and inception of the program; however, privacy legislation that prevented the FNHA from housing the data prevented full alignment with OCAP. ¹⁹

When engagement is government-led or arranged by health system organizations, concerted efforts need to be made to foster equity and access. A recent review of 20 years of government-led public and patient engagement activities on health policy issues in Canada found that only approximately 10% of activities prioritized structurally marginalized populations. ²⁰ A majority of initiatives required participants to self-select and solicited primarily the one-time feedback of the public. While self-selected, feedback-based activities (e.g., surveys) generally require less resources to organize, they tend to overrepresent the views of the already-interested public and those who have the resources and connections to find such opportunities. Governments and organizations may need to explore targeted approaches to recruitment to ensure diverse members of the public have the opportunity to engage, and experiment with different models such as co-design and public deliberation to determine the reasoned perspectives of the public.^21,22 Transparency, where organizations are clear about the expectations and outcomes of participation, and accountability, where organizations embed report-back mechanisms to close the loop on engagement, can help promote trust and satisfaction among those who are engaged. ²³

Approaches to Community, Public, and Patient Engagement: How Do We Structure Participation?

Throughout this article, we have pointed to a number of engagement methods, including surveys, PFACs, citizens’ panels, and co-designed initiatives, that may be leveraged for engaging people in Canada about our health information system. See Rowe and Fewer ²⁴ for a typology of engagement methods and the IAP2 Spectrum of Public Participation ²⁵ to understand how methods can map on different levels of participation. Some of these methods have already been used in Canada in the context of health data and data-dependent technologies.^26-28 Importantly, all methods involve a trade-off between the time and resources required and the level of engagement that is possible. In general, one-time surveys and consultations will require fewer resources and can probably reach a broader swath of the public. However, such methods will only garner the immediate and limited perspectives of the public. Citizens’ panels and co-design projects are time and resource-intensive and involve smaller groups of people; however, these approaches can help uncover the reasoned and sustained perspectives of individuals who are engaged in long-term dialogue.

Overall, we suggest that multi-modal and fit-for-purpose approaches to engagement are required to meaningfully engage diverse members of the public and patients. By “multi-modal,” we mean the combination of different methods to enable the participation of individuals on their own terms. Some people may not have the time or interest to participate in a citizens’ panel but could complete a one-time survey. Members of equity-deserving groups may be willing to engage with a trusted community-based organization whose partnership with government could then inform the deliberations of a parliamentary standing committee. By “fit-for-purpose,” we mean the alignment between the purpose of engagement, who is engaged, and how they are engaged. A fit-for-purpose approach recognizes that no method of engagement is necessarily superior to another, but that certain methods are best suited for certain goals. For instance, if the purpose is to co-create governance mechanisms in collaboration with a particular community, this would likely require a long-term, dialogic, and partnered model of engagement.

Finally, to ensure that engagement reflects the priorities of health data justice, we argue that public, patient, and community engagement will need to be continuous and extend across electoral cycles. This will ensure that engagement efforts are adaptive to the rapidly evolving landscape of data-intensive technologies, responsive to long-term policy priorities, and reflective of the shifting interests of the public. Sustained engagement will afford the time required to build strong community partnerships founded on trust and reciprocity which will be essential for safe and responsible engagement with structurally marginalized groups. We see an important role for quasi-independent bodies that can organize serial engagements in multi-modal formats to ensure that diverse members of the public are informing governance decisions within the framework established by the Pan-Canadian Health Data Charter. We would also encourage decisionmakers to leverage Canada’s rich history of leadership in public and patient engagement through cross-sectoral partnerships between research, policy, and civil society. These key considerations for public, patient, and community engagement are summarized in Box 1.

Box 1. Recommendations for Public, Patient, and Community Engagement for Health Information System Development and Oversight in Canada

(1) Decisions about who to engage (which members of the public, patients, communities) and who arranges engagement (which organizations) should enable participation and foster empowerment.

(2) Governance should be multi-modal, enabling multiple channels for participation.

(3) The purpose of engagement, specific community members recruited, and engagement methods should be aligned.

(4) Engagement with First Nations, Métis, and Inuit should prioritize community safety and partnership through alignment with principles like OCAP.

(5) Detailed methods for recruitment, participation, and oversight should be co-determined by community members.

(6) Engagement structures should exist longitudinally, enabling learning and transcending electoral cycles.

(7) Engagement should be in collaboration with independent or quasi-independent bodies responsible for upholding the principles of the Pan-Canadian Health Data Charter.

(8) Engagement should include cross-sectoral partnerships where possible and appropriate.

Conclusion

The Pan-Canadian Health Data Charter, a foundational contribution towards developing Canada’s health information systems, clearly articulates the need for including diverse public interests in policy design and implementation. Purposeful and versatile initiatives that engage diverse members of the public, patients, and communities can inform robust and accountable governance mechanisms. A health data justice perspective recognizes that structurally marginalized communities are overexposed to risks of harm from health information systems and data-intensive health technologies, especially those which are not designed with these communities in mind. This demands unique attention to responsible community engagement with structurally marginalized groups and warrants careful consideration of who should initiate engagement and how participation should be configured to promote community safety. Long-term partnered approaches that harness leadership in community spaces and policy sectors may be especially rich and productive, connecting public interests with policy action. As Canada takes initial strides towards actioning the Charter, we emphasize the need to prioritize public, patient, and community engagement for creating a health information ecosystem that fully realizes the health and social benefits of Canadian health data.