Public Engagement

This is an umbrella term we use to capture a wide variety of activities and roles. Engagement might involve individuals, or groups of, citizens, taxpayers, service users, clients, patients, family caregivers, volunteers, community members and advocates in various stages and domains of the health system and policy decision making. Examples of public engagement activities include:

• Deliberation: processes in which a small group of broadly representative citizens engage. Processes designed to get input based on considered discussion and public judgement.

• Participation: processes in which a large number of citizens engage. Processes are designed to get input and also increase the civic capacity/ability of citizens.

• Public / Community Consultation: open public forums, usually led by bureaucrats or staff facilitators. These tend to be task- or event-specific and time-limited.

• Public Feedback: opportunities for the public to provide feedback on policy proposals, public services, or experiences. Activities might include surveys, opportunities to comment on proposed legislation, or interviews about experiences.

Public engagement activities can be used to inform policy development and implementation. They may also be used to inform the governance, financing and funding of a wide range of programs, services and therapies (e.g., public health, pharmaceuticals and biotechnology, mental health and addictions, home, community and residential care).

Citizens / The Public

Interested members of the public who choose to become involved in (or are invited to contribute to) engagement activities. These members of the public may or may not have direct experience with the health system; their perspectives (as users or non-users of the system) is why they are asked, or choose, to engage. It can also refer to people who bring broader social values to engagement efforts. More narrowly defined, citizen groups can also include patients, family members and caregivers who bring lived experience to inform policy discussions. The boundaries between these categories are blurry and contested, and require careful reflection on who is defining and for what purpose. In this project, we separate citizen/public engagement and stakeholder engagement.

Patients / Caregivers

Patients, families, and caregivers who choose to become involved in or are invited to contribute to engagement activities. For us, the most important distinction is between processes that ask or require patients to participate as individuals and those that ask or require patients to participate as members of a patient organization. In both cases, the terms patient or caregiver signal the intention to engage people with lived experience of illness and the health system. However, when patients engage as members of a patient organization, they may be participating on behalf of all patients with their condition, or patients more broadly. In addition, organized patient groups may receive financial and other support from pharmaceutical manufacturers, and may have links to clinical experts. Our project focuses on efforts to engage the public and/or patients as defined here, but we are attentive to the complexity of the relationships between actors in this sphere.

Trust

A general belief in the reliability of other people, organizations (including governments), and processes. Trust is necessary for cooperation; it helps to coordinate action and facilitate social order and cohesiveness. It can also strongly influence policy design and feelings of ownership over policy outcomes. In the context of public engagement, trust must flow in two directions. Public engagement is often seen as a way to increase public trust in institutions and organizations, but it also requires that institutions trust both the perspectives, experiences and expertise of participants and the processes by which they are engaged.

Democratic legitimacy

The acceptability of a decision or the process used to reach that decision. Members of the public, patients and caregivers, and policymakers and experts will tend to assess legitimacy from different positions and with different goals. Legitimacy in public engagement refers to three distinct processes:

1. Input legitimacy: the extent and representativeness of citizen/patient influence on policy formulation. Who has an opportunity to provide input? How are citizens/members of the public empowered to affect processes of policymaking?

2. Throughput legitimacy: the quality of participatory opportunities and the design of deliberative systems. Is the public engagement process itself democratically legitimate, and to whom is the process acceptable?

3. Output legitimacy: the effectiveness of the policy or regulatory response to achieve the specified policy goals. When public engagement informs a choice about health resources or policy priorities, is that choice legitimate or acceptable?

Different criteria for legitimacy may emerge at each stage of the engagement process, and may at times conflict. This means that broad legitimacy requires clear, shared goals for public engagement and clear roles for various participants.

Representation

Considering whose voices are informing decision-making, and making sure that these voices reflect a wider population. This includes actively considering whose voices should inform decision processes, creating opportunities for engagement, and supporting the capacity of groups and individuals to participate.

Representation has important implications for democratic legitimacy: think of the phrase ‘nothing about us, without us’ used by patient advocacy groups. Representation is often contested in an engagement activity. Organizers and participants may have different ideas about which interests or communities should be represented, and who is qualified to act as a representative. There may be questions about whether representation is linked to a meaningful opportunity to contribute or influence the decision. There may also be concerns about representatives becoming ‘coopted’ through ongoing participation in an institutionalized engagement process.

“Including” some patients, caregivers, or members of the public does not necessarily guarantee a process that is representative of all affected interests or different identities and perspectives in a group. The relationship between representation and legitimacy depends on who is assessing that legitimacy. For our purposes, representation is a thin concept of how citizens and patients may show up in health policy advising and decision-making, while inclusion, equity and justice signals a thick concept that asks analysts to go beyond merely describing who is at the table.

Inclusion, equity and justice

Terms that refer to fairness, impartiality and the welcoming of people with a range of identities, social locations and ideas. Prioritizing inclusion, equity and justice goes beyond tolerating these differences. It means proactively creating the conditions that allow all people to thrive and contribute in positive and mutually beneficial ways. This includes acknowledging the historical and systemic forces that underpin various forms of social, political and economic exclusion. It also includes recognizing that some marginalized individuals and groups need focused attention and increased investment to achieve equitable outcomes. Justice in this context relates to the equitable distribution of rights, resources and opportunities for all groups in society.

Given that power dynamics play a central role in public engagement efforts (e.g. who has power and who wants power), there are critical questions about how to design participatory structures and engagement activities to ensure that people affected by policy decisions have the opportunity to meaningfully engage and contribute. This is a particularly important and complex issue for people who have been systematically disadvantaged by the health system. They often have the most acute health-related needs, but also face the highest barriers to participation in health policy.

Policy Learning

The updating of beliefs based on experiences, analysis or interactions – when applied in policy making. This may be at the micro-level – learning between individuals, the meso-level – for example, at the organization – or at the macro-level, across different government units. Learning can be between individuals (such as individuals negotiating with key decision-makers), or between governments (such as policy transfer, or a jurisdiction applies lessons learned from policy decisions made in another jurisdiction). Co-creation processes – where citizens co-design public services, along with policymakers – is an example of policy learning.

Policy Responsiveness

How government action responds to the preferences of citizens, and to the processes of public engagement. This is connected to the concept of representative government – policy-making that is unresponsive to public preferences may indicate a weak representative government. Many factors affect policy responsiveness, including issue salience (whether the general public view the topic as important) and the involvement of interest groups in the policy process.