CE Handbook - Chapter 1: Introduction

[ Table of Contents ]

1.1 How this Handbook Can Help

This Handbook has been developed as a companion guide to CIHR's Framework for Citizen Engagement and is designed for CIHR staff leading or supporting CE activities. It incorporates CIHR's vision for engaging citizens (as outlined in the CE Framework) and introduces best practices, approaches, and methods that can be applied for effective engagement activities. Please note that professional development training in citizen engagement will augment the knowledge that may be gained from using this handbook. A standard of excellence already exists for CE expertise (both nationally and internationally), but CIHR does not currently have the capacity to match that expertise with in-house training alone. As such, a number of training programs are available nationally and internationally that are highly recommended for CIHR staff. These training programs are described in Chapter 8. The Partnerships and Citizen Engagement (PCE) Branch may also develop a tailored course through the CIHR learning program. Please note, however, that the use of professional consultants is strongly encouraged for larger-scale CE activities, particularly in the development of strategic plans and priorities, guidelines, and policies.

"Where traditional tools, such as opinion polls, measure 'top of the head' public views, deliberative public engagement provides policy-and decision-makers with much richer data on public attitudes and values, offers opportunities to more fully explore why people feel the way they do, and allows the time to develop ideas, options, and priorities with the public. For the public participants, the experience provides opportunities to share and develop their views with each other and directly with experts and decision-makers."

What this Handbook can do, however, is introduce CIHR staff to the breadth of considerations to take into account as they plan their own CE activities. Lessons learned from national and international organizations have been considered in the creation of this Handbook, and the tips and suggested approaches contained in its chapters have been tailored to suit CIHR's needs and mandate. Furthermore, as noted above, CIHR truly does have a foundation of CE that developed naturally. The activities that the Institutes and a variety of branches have undertaken over the years highlight potential approaches for other staff members to use in their own CE endeavours (please see the CE Framework appendices for a complete listing of past CE activities). In addition, this Handbook showcases a handful of CIHR's experiences and best practices through the CE Case Studies (see Section 1.5).

How to Use the Handbook

The chapters of this Handbook are divided according to the four focus areas that were established in the CE Framework—with the addition of a tailored Decision Tree Model (Chapter 2), a discussion about the key elements of the planning process (Chapter 3), and a Planning Resources chapter (Chapter 8) to help CIHR staff develop CE plans.

Please note that CIHR employees should read the CE Framework and Chapters 1-3 of this Handbook before proceeding to the chapter that addresses their current CE needs and activities.

Chapter 2: The Citizen Engagement Decision Tree Model
This chapter is designed to take CIHR staff through layered stages of choosing an appropriate CE approach. Its components (which include the Decision Tree Questions, the CE Approaches Matrix, and the Summary Table of CE Approaches) build on one another to help staff members clarify their objectives, consider potential activities, and begin to plan their approach.

Chapter 3: Developing Your Citizen Engagement Plan
This chapter builds on the information provided in Chapter 2. Once the appropriate CE approach has been chosen, this chapter will help CIHR staff to consider the key elements of the CE planning process, including ways to be as inclusive in CE recruitment as possible.

Chapter 4: Enhancing Citizen Representation on CIHR's Boards and Committees (Focus Area 1)
This chapter outlines the current roles that citizens have on CIHR's governance boards and committees. Challenges to including citizens in settings that are predominantly made up of researchers are discussed, and best practices for orientation and training are drawn from the experiences of some of CIHR's current volunteers.

Chapter 5: Engaging Citizens in Informing Strategic Plans, Priorities, Policies, and Guidelines (Focus Area 2)
This chapter focuses on the ways in which Institutes and CIHR Corporate can engage citizens during the development of strategic plans, priorities, policies, and guidelines. To illustrate how the CE Decision Tree Model can be used to assist with plans for this type of engagement, a fictional example takes the reader through the necessary stages of planning to include citizens in the development of strategic priorities.

Chapter 6: Research Priority Setting and Integrated Knowledge Translation (Focus Area 3)
This chapter focuses on the CIHR funding tools that have an Integrated Knowledge Translation and/or a Community-Based Research component. The ways in which citizens can be included in the research priority-setting process are also discussed.

Chapter 7: Knowledge Dissemination and Public Outreach (Focus Area 4)
This chapter provides the reader with a brief introduction to knowledge dissemination and the ways in which citizens can be engaged to help develop plans for dissemination and appropriate communication materials.

Chapter 8: Citizen Engagement Planning Resources
This chapter contains information about evaluating CE activities, finding a reliable CE expert to help you with your CE plans, and training opportunities that CE professionals provide on a regular basis.

1.2 What is Citizen Engagement?

Citizen Engagement (CE) is the meaningful involvement of individual citizens in policy or program development. To put it simply, citizens are "engaged" when they play an active role in defining issues, considering solutions, and identifying resources or priorities for action. This "meaningful involvement" can take place at a variety of stages in the research, planning, or implementation phases of a project, but the key to CE is to listen to citizens' voices and to use their feedback effectively. For the Canadian Institutes of Health Research (CIHR), CE activities, regardless of their scope, benefit from an approach involving an earnest desire to receive, understand, and take into account the values, perspectives, experiential knowledge, and priorities of Canadians. CIHR's new strategic plan, Health Research Roadmap (2009-2014) promotes the engagement of citizens in the health research and the knowledge translation processes as an important area of focus for CIHR. The CE Framework, included under strategic direction #3 of the new strategic plan, discusses how CIHR intends to move forward in realizing a more systematic, ongoing integration of citizens' input in priority setting, governance, and funding programs.

"Citizen Engagement is premised on the belief that people should have and want to have a say in the decisions that affect their lives."

Handbook on Citizen Engagement: Beyond Consultation (Canadian Policy Research Networks 2008)

CE activities can range from the inclusion of citizen representatives on steering committees to the development of partnerships with targeted community groups that address a problem or promote change. There is no "one size fits all" prescription for CE, and the needs of different organizations, scenarios, or audiences may lead to unique engagement practices and experiences. Above all , however, including the voices of citizens in an organization's planning, decision-making, implementation, or evaluation processes requires two-way communication that underscores the value of what those new voices bring. Input should not be sought for input's sake; instead, communication should be interactive in order to generate informed participationFootnote 1 from citizens, which may confirm the direction of a particular program, or may lead to the inclusion of creative approaches to reach a shared goal.

1.3 The Development of CIHR's Framework for Citizen Engagement

The concept of CE has been gaining greater attention both nationally and internationally. While the principles of CE have been embraced by a number of organizations within the broad spectrum of health and wellness, of note are CIHR's counterparts in Australia, the United Kingdom, and the United States; these funding agencies have developed CE programs and are currently developing best practices for CE in the context of health research funding. In Canada's federal Health Portfolio, the need to include citizens in the programs that use public funds (i.e., taxes) has also been recognized; both the Public Health Agency of Canada and Health Canada have implemented frameworks and programs that support CE activities.

"CIHR values the engagement of citizens in governance, research priority setting, developing its strategic plans and strategic directions, and as an effective means of improving the relevance and translation of research into practice and policy. Ultimately, this will contribute to improving citizens' quality of life, more effective health services and products, and a strengthened Canadian health care system."

CIHR's Framework for Citizen Engagement, Value Statement

CIHR has a solid foundation of CE that has developed naturally. In 2007, CIHR's Knowledge Translation Portfolio identified CE as a priority and as a vehicle to enhance CIHR's ability to achieve the knowledge translation imperative of its mandate.Footnote 2 Citizens can provide valuable input into decisions about research priorities and practices. Including their points of view in the decision-making process not only ensures that CIHR's priorities are aligned with the concerns and values of Canadians, but also provides the opportunity for mutual learning, which can help improve the scientific literacy of our citizens.

CIHR's Framework for Citizen Engagement (CE Framework) was designed to assist CIHR in establishing a more systematic way of engaging citizens. Instead of having CE activities take place across the organization (to varying degrees) in isolation, the Framework provides the basis for building on the knowledge and experience that already exists at CIHR, and establishes organizational goals and values for deepening CE in its health research activities. While CIHR may be lagging behind in implementing CE programs (compared with organizations such as Australia's National Health and Medical Research Council, the United Kingdom's Medical Research Council, and the United States' National Institutes of Health), it is now embracing the opportunity to learn from international models of CE and to provide leadership for CE in the Canadian context.

Please note: Readers (CIHR staff) will gain the most benefit from this Handbook by familiarizing themselves with the CE Framework to orient themselves with the concepts, principles, focus areas, and strategic directions for CE at CIHR.

The CE Framework was developed through two main activities: 1) an environmental scan of CE activities and programs used by national and international health organizations (research funders and regional health authorities); and 2) a survey of CIHR's Institutes and relevant branches, the Public Health Agency of Canada, and Health Canada that asked participants to outline their current and past CE activities (or plans). All of the CIHR activities and initiatives noted in the surveys were categorized into five "levels," based on previous work that Health Canada had done to establish the "Five Levels of Public Involvement."Footnote 3 The categories increase in scope, complexity, and degree of public involvement with each ascending level. The levels are as follows: 1) inform and educate, 2) gather information, 3) discuss, 4) engage, and 5) partner. Please refer to the CE Framework (Section 1.1) for more details.

An impressive number of CE activities and initiatives were captured in the survey. Analysis of the resulting inventory revealed that most of CIHR's CE activities involve consultations with targeted audiences of people who are personally affected by the decisions being made (such as patients and health consumers) and voluntary sector organizations (who represent patients, advocates, and members of the public). Given CIHR's mandate, these results are not surprising, but the survey also revealed that the majority of CIHR's CE activities fall into the lower levels of engagement, ranging mostly from Levels 1 through 3. Together, the CE Framework and this Handbook will help CIHR staff members build on the considerable, although variable, CE activities that the organization has already implemented, and will also facilitate CIHR's movement into the higher levels of engagement, as defined by Health Canada.

The draft CE Framework underwent extensive consultation, both internally and externally, over a one-year period in order to ensure that CIHR was both realistic in its expectations and prepared to support the goals and objectives outlined in the document. In March 2009, the CE Framework was endorsed by CIHR's senior management.

1.4 Key Concepts and Guiding Principles

At the heart of this Handbook (and the CE Framework) is the belief that engaging citizens in the work of CIHR will lead to improved health outcomes for Canadians and strengthen knowledge translation, which is central to CIHR's overall mandate. In addition, however, is the notion that CIHR will reap its own benefits from gathering the thoughts and opinions of a variety of public audiences. These ideas are depicted in Figure 1.

Figure 1: The Benefits of Sustained Citizen Engagement

This model is meant to be read from bottom to top. With a foundation of sustained citizen engagement, CIHR will be able to work with citizens (through informed participation) to gather their knowledge, experiences, perspectives, and values. This information allows us to ensure that our priorities are aligned with the expectations of Canadians, which then enables us to fund relevant research that addresses gaps and can be translated into practice, ultimately benefitting the health of Canadians.

Figure 1: The Benefits of Sustained Citizen Engagement

As a federal entity, CIHR uses taxpayer dollars to fund health research and to run the organization. CE activities allow CIHR to be accountable to those taxpayers by educating them in the ways health research and funding work, but also by inviting their feedback and valuing their input. At the same time, CIHR has the opportunity to contribute to the improvement of health science literacy in Canada. Engaging citizens in the operations and decision-making processes of CIHR provides the organization with the perfect venue for disseminating information about health sciences and the impact that research has on the health of Canadians.

CIHR's Guiding Principles for Citizen Engagement

The following guiding principles from the CE Framework should underpin all of CIHR's CE activities. A rationale and recommended criteria for each of the guiding principles is provided in Appendix 1 of this handbook to demonstrate how CIHR staff can adhere to them in their own work.

  • Working with citizens will add value to the program or project.
  • Mutual learning/understanding will build trust and credibility.
  • Openness will enhance transparency and accountability.
  • CIHR will be inclusive in its approach to citizen engagement.
  • Citizens will be supported to ensure their full participation.

The Focus Areas of the Framework

The CE Framework outlined four main focus areas, which are also reflected in the chapters of this Handbook:

  • Citizen representation on CIHR's boards and committees
    • Citizen participation on CIHR committees and boards should be enhanced and can encompass both advisory and decision-making roles; these roles provide mechanisms for transparency and collaborative decision making.
  • Corporate and Institute strategic plans, priorities, policies, and guidelines
    • Citizens can provide valuable input into the development and direction of new initiatives and priorities. A wide range of approaches exists (and should be used) to solicit citizen participation throughout the development process.
  • Research priority setting and integrated knowledge translation
    • As a health research funder, CIHR should embrace the opportunity to design funding tools that encourage researchers to engage with citizens to establish the research questions.
  • Knowledge dissemination and public outreach
    • CIHR can enhance its current efforts to communicate the benefits of health research by including citizens and voluntary sector organizations in the decision-making processes that lead to the selection of communication materials.

These focus areas (highlighted in Figure 2) were chosen based on the scan of CIHR CE activities and through extensive internal consultation with senior staff from Institutes and branches; they are grounded in the needs and capabilities of the organization. For activities that fall into any of these categories, careful consideration of the goals and rationale for engagement should be paired with close attention to the best type of interaction to suit the situation.

Figure 2: The Four Areas of Focus

Figure 2: The Four Areas of Focus

1.5 Case Studies in this Handbook

Case studies are included in chapters 4 through 7 to illustrate best practices, challenges, and the use of strategic design questions in the planning phase of a CE activity. These studies are drawn from the real-life experiences of some of CIHR's programs and initiatives (and in one case, a CIHR-funded researcher), and, while they showcase CIHR's existing strengths, they offer guidance and building blocks for future CIHR CE activities.

Case Study 1: CIHR's Community Reviewers Program
This study is part of Chapter 4. It outlines the evolution of the Community Reviewers Program and describes best practices for orientation and training in a committee/board context.

Case Study 2: The Development of the Institute of Gender and Health's Strategic Plan
This study is part of Chapter 5. It describes the extensive consultation process that the Institute of Gender and Health (IGH) undertook to develop its latest Strategic Plan and outlines IGH's approaches and lessons learned.

Case Study 3: CIHR's HIV/AIDS Community-Based Research Program
This study is part of Chapter 6. It outlines the ways in which community members have been engaged to set and evaluate the research priorities of the CIHR HIV/AIDS Community-Based Research Program.

Case Study 4: The Kahnawake Schools Diabetes Prevention Project
This study is part of Chapter 7. It describes the Kahnawake Schools Diabetes Prevention Project, which involved a long-standing community-university partnership between researchers and the Mohawk community of Kahnawake. In this case, the community members helped interpret research results and also helped shape the messaging about the project that went out to the community.

Case Study 5: The CIHR Synapse Program
This study is also part of Chapter 7. It outlines the ways in which CIHR has engaged representatives of the general public to help shape an education program targeting youth.

1.6 CIHR's Continuum of Engagement

As noted above, the CE Framework originally introduced five levels of engagement, based on Health Canada's "Five Levels of Public Involvement." For CIHR's purposes moving forward, however, these levels have been condensed into four main categories (described below in Figure 3). These levels still relate to Health Canada's continuum, but they have also been adapted to reflect the Public Participation Spectrum developed by the International Association for Public Participation (IAP2).Footnote 4

Figure 3: CIHR's Continuum of Engagement

Listening/Informing Listening/Informing: Used primarily to explain or gather information, this level of engagement is employed when priorities and decisions are still being shaped. It allows CIHR to explain the issue to citizens, while (at the same time) it provides an opportunity for CIHR to gather information to understand the perspectives and ideas of citizens. Promise to the public:
We will keep you informed and will provide you with an opportunity to ask questions.
Discussion Discussion: This level of engagement generally involves two-way information exchange in which the public discusses a policy, issue, or research priority. Discussion among and with different stakeholders is encouraged. This type of interaction allows CIHR to deepen its knowledge by exploring and responding to the ideas and concerns described by individual participants. Promise to the public:
We will keep you informed, and will listen to and acknowledge concerns; we will provide feedback on how public input influenced the decision.
Dialogue Dialogue: This type of interaction involves thorough and in-depth deliberation about the policy, issue, or research priority. Different perspectives are shared and parties can influence each other. These dialogues allow CIHR and participants to explore and work through issues together, and gain a greater understanding of each other's perspectives and values. The closer relationships and greater interaction can lead to new ideas and consideration of complex tradeoffs. Promise to the public:
We will work with you to ensure that your concerns and issues are directly reflected in the decisions made; we will provide feedback on how public input influenced the decision.
Collaboration Collaboration: At this level of interaction, parties share responsibility for implementing decisions and a mutually beneficial relationship is usually established. With this pattern of communication, the goal is both to create CIHR-to-participant relationships and participant-to-participant relationships. The participants have a greater role in shaping the process as well as its outcomes. Promise to the public:
We will look to you for direct advice and innovation in formulating solutions; we will incorporate your advice and recommendations into the decisions to the maximum extent possible.

In this new four-tiered model of engagement, the original levels 1 and 2 (Inform and Educate, and Gather Information, respectively) have been combined into one level. This adaptation makes sense for CIHR, particularly because a number of the activities captured in the CE survey results for the Framework straddled those two categories. Otherwise, the remaining categories from the CE Framework correspond directly to the categories in CIHR's tailored "Continuum of Engagement": Discuss relates to Discussion, Engage relates to Dialogue, and Partner relates to Collaboration. These categories relate to the level of impact that the public can have in a decision-making process.

The concepts and information found in the IAP2 Public Participation Toolkit are widely referenced in this Handbook as they represent international standards of CE best practices. The modification of the original levels of engagement also allows CIHR to map the objectives of the CE Framework and individual CE activity needs to the Summary Table of CE Approaches (found in Chapter 2), which is based largely on work done by IAP2.

1.7 Next Steps

This Handbook will exist as a "living document" and will be updated periodically as new best practices for CE are developed, and as CIHR's level of engagement with Canadians increases. The Partnerships and Citizen Engagement (PCE) Branch will also be developing a shared drive of CE resources for CIHR staff and tailored learning sessions. Any questions about CE and CIHR should be directed to the PCE Branch at pce.pec@cihr-irsc.gc.ca.

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