CIHR’s Framework for Citizen Engagement – Section Two: Setting the Context

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2.1 Defining Citizen Engagement

As defined by the OECD, CE "requires governments to share in agenda-setting and to ensure that policy proposals generated jointly will be taken into account in reaching a final decision."Footnote 8 CE involves proactive mechanisms for dialogue and shared agenda-setting in decisions that affect Canadians as health consumers and citizens. This engagement means sustained and active involvement over a long period of time through processes that promote mutual learning, shared decision-making and (possibly) ongoing partnership and collaboration.

For CIHR, citizen engagement is the meaningful involvement of individual citizens in policy or program development, from agenda-setting and planning to decision-making, implementation and review. It requires two-way communication that is interactive and iterative with an aim to share decision-making power and responsibility for those decisions. This requires bringing together a diverse group of citizens that includes the broader public, not just the usual stakeholders for ongoing dialogue, deliberation and collaboration in informing CIHRs work.

While CE is a two-way exchange, it often begins with a one-way dissemination. CIHR, through its Institutes and its Marketing and Communications Branch, is now devoting more resources than ever before to improve the health science literacy of targeted populations. These activities are generating interest from members of the general public, who then want other opportunities to support CIHR's work.

One of the means available to achieve this goal is to strengthen 'integrated knowledge translation' as a core element of the research process. Integrated KT (iKT) is a different way of doing research: it brings together researchers and research users to shape the research process (starting with collaboration to set the research questions, decide on the methodology, get involved in data collection and tools development, interpret the findings and help disseminate the research results). This approach, also known by such terms as collaborative research, action-oriented research, and co-production of knowledge, should produce research findings that are more likely be relevant to and used by the end users. For a complete glossary of terms and definitions related to CE, please refer to Appendix 6.

The activities that are Institute-driven, such as strategic initiatives, bring stakeholders together as "knowledge users" in consensus conference forums that ultimately shape the research questions. This inclusion of knowledge users ensures that the initiative's directions reflect the needs of these important constituencies.

Broadly speaking, CIHR stakeholders are made up of health charities and other not-for-profit organizations, federal, provincial and territorial governments and agencies, universities and academic health science centres, health professionals, health organizations, other research agencies, industry, the public, and international organizations. The internal scan of involvement activities demonstrated that some or all of these stakeholders take part in setting research priorities and plans, strategic directions, knowledge translation activities and in decision-making bodies of the Institutes and corporate governance committees at CIHR.

2.1.1 Citizens: A Typology for CIHR

The term "citizen" includes interested representatives of the general public, consumers of health services, patients, caregivers, advocates and representatives from affected community and voluntary health organizations. However, not all citizens have the same interests in participating in CIHR's work and not all have the same contributions to make. CIHR has, therefore, adopted a typology of citizens (see Figure 3, below) to determine how and when to engage specific individuals or groups most appropriately, based on what their likely contributions will be.

This typology represents the range of interested citizens and will be used in the planning process to help identify who the relevant audiences are that need to be involved. The typology does not include individuals or groups who are considered special or technical experts or health professionals as CIHR is focusing on accessing the knowledge and experiences that reflect the public's perspectives on values and priorities.

Personal Organized
Affected individuals
(directly affected yet not affiliated with an organized group)
Primary groups
(groups representing citizens directly affected)
Individuals from the General public
(personally interested and wish to contribute)
Secondary groups
(have a potential to reach both primary groups and individuals)

Figure 3: Citizens TypologyFootnote 9

Citizens: Citizens comprise both individuals and/or groups who may be affected by, able to affect, have a special interest in or are involved as either tax payers, consumers of health services, patients, professional caregivers, advocates, representatives of an affected community or as representatives of voluntary health organizations. It is clear that some overlap between groups and individuals can occur; they are not mutually exclusive.

Affected Individuals: These individuals are personally affected by CIHR-funded research and can speak to their own experiences, perspectives and ideas rather than represent the viewpoints of any organization with which they may or may not be affiliated. It is important to make this distinction as they are being asked to participate due to the fact that they are not affiliated with or directly represented by a group or organization. Their input will be sought to uncover their personal values, knowledge and experience.

Examples of affected individuals can be patients, consumers of health services, a member of an identifiable population (example: an aboriginal person, a youth, an elderly person) and/or individuals affected by specific diseases. Other affected individuals would also include those who have relationships with these individuals, such as family members or caregivers.

Individuals from the General Public: Individuals from the general public may become involved through their role as tax payers and, therefore, supporters of publicly funded health research. They may be genuinely interested in health research as a means of maintaining or improving their health, as well as in expanding their personal knowledge.

Working with both affected individuals and members of the general public offers an opportunity to hear directly from citizens and thus improve CIHR's ability to listen, understand and value the views, concerns and experiences of citizens.

Primary Groups: These groups consist of organizations or associations with the potential to contribute and affect decisions about current or future research priorities or with affiliated members who are directly affected and can contribute to shaping future health research directions. Tables 1 and 2 in Appendix 1 provide examples of how CIHR and its Institutes have engaged representatives of relevant voluntary health organizations in meetings or conferences for the development of strategic initiatives and for knowledge translation activities.

Secondary Groups: These groups are comprised of organizations or associations with the potential to reach other groups and directly affected citizens, or to contribute and affect future health research directions. Secondary groups in this example may include voluntary health organizations with mandates that involve education programs or public health services. Some examples include: local, federal or provincial Councils on Aging, community support organizations, Canadian Healthcare Association, Canadian Public Health Association.

Both primary groups and secondary groups are key stakeholder groups who represent the interests of patients, consumers, advocates, donors and volunteers. As such, they can help identify citizens who have a desire to contribute to CIHR s citizen engagement activities. (More discussion of this valuable role is explored in Section 3.)

2.2 A Review of Citizen Engagement Activities

2.2.1 A review of citizen engagement in research funding organizations in Canada and abroad

To gain a better understanding of how other research funding organizations have incorporated CE into their operations, CIHR commissioned a literature reviewFootnote 10 of CE activities and programs used by research funding agencies in Canada and abroad. Figure 4, below, provides a summary of activities and programs offered by the international organizations examined in the review.

Figure 4: Citizen Engagement Activities of Selected International Organizations

Purpose of engagement Methods of engagement

Dissemination of research findings and public outreach

  • Medical Research Council (MRC) (UK)
  • National Institute for Health & Clinical Excellence (NICE) (UK)
  • National Health and Medical Research Council (NHMRC) (Australia)
  • National Institutes of Health (NIH) (US)
  1. Annual Meeting open to the public: MRC
  2. Public engagement opportunities on website: NICE; NIH; NHMRC; MRC
  3. Resource guides to help public engage with the organization: NHMRC
  4. Public presentations: NIH
  5. E-mail distribution lists: NIH
  6. Town hall meetings: NIH

Governance accountability

  • MRC
  • NICE
  • NIH
  1. Lay members on committees: NHMRC;MRC; NICE
  2. Governance level advisory body: Public Panel (MRC); Citizen's Council (NICE) Director's Council of Public Representatives (NIH) ;Advisory Committee on Consumer and Community Engagement (NHMRC)
  3. Public participation on peer review: MRC

Strategic planning

  • MRC
  • NICE
  • NIH
  1. Grant support provided to researchers to consult and engage with public: MRC; NHMRC
  2. Public input sought for identification of research priorities: NICE
  3. Consultation exercises for strategic plans and requests for submissions on policy guidelines: MRC; NICE; NHMRC; NICE

Identification of Research priorities and participation in research studies

  • MRC
  • NICE
  • NIH
  1. Implemented Organizational Framework and Policy for Consumer, Community Participation: NHMRC; NICE
  2. Grant support for researchers engaging and communicating with public: MRC, NHMRC
  3. Consultations (both online and face to face): NHMRC; MRC; NICE; NIH

The international examples of CE provide a comprehensive range of opportunities for both involving citizens and disseminating research findings. The activities of the surveyed organizations engage citizens on a variety of levels. The websites of all the international agencies identify events and opportunities open to the public and include information for signing up for email distribution lists. They post reports of past consultation exercises, support documents, and contact information of dedicated engagement staff. In particular, the Australian National Health and Medical Research Council's model framework is comprehensive: it provides guidance on developing CE for a variety of users, including research funding bodies, research institutions, clinical and basic scientists, health consumers and researchers.

The scan of international organizations revealed methods and best practices that CIHR could use in expanding its own activities.Footnote 11 In the course of researching the above programs, interviews were conducted with key staff at the UK Medical Research Council and Australia's National Health and Medical Research Council (NHMRC). The Executive Director of the Health Evidence and Advice Unit from NHMRC, Mrs. Cathy Clutton, has shared information and guidance. Mrs. Clutton visited CIHR in summer 2008 to meet with the PCE Branch and to give a presentation to over 40 interested CIHR staff. Invitations were extended to other members of the Health Portfolio, resulting in the emergence of a collaborative relationship between NHMRC, CIHR, Health Canada and the Public Health Agency of Canada.

In the United States, newly elected President Barak Obama issued a memorandum on his second day of office: "Public engagement enhances the Government's effectiveness and improves the quality of its decisions. Knowledge is widely dispersed in society, and public officials benefit from having access to that dispersed knowledge. Executive departments and agencies should offer Americans increased opportunities to participate in policymaking and to provide their Government with the benefits of their collective expertise and information. Executive departments and agencies should also solicit public input on how we can increase and improve opportunities for public participation in Government."Footnote 12 CIHR will embrace opportunities to learn from and work with the National Institutes of Health (NIH) as their CE activities evolve under this direction.

Here at home, Canadian health organizations are also finding opportunities to engage citizens in their work. The Canadian research funding agencies examined in the CIHR-funded literature review (including the Social Sciences and Humanities Research Council, the Natural Sciences Engineering Research Council and the Canadian Health Services Research Foundation) are interested in expanding the scope, reach and impact of their public engagement activities. Canadian research funding agencies want to support more interactive engagement between the public and themselves, and between research teams and the communities they research. Furthermore, there is a desire by these organizations to communicate research findings to the public in a more effective manner and to develop tools that will assist their organizations to effectively engage the public. A recent review of articles on Canadian public participation in health-care governance found that most attempts in Canada to involve the public in health care have occurred at the regional and program levels. Although these are the levels at which most public engagement activities occur, few regional health authorities (RHAs) have sustained public engagement activities beyond having community members on their boards of trustees. Part of the reason for this lack of sustained activities may be due to confusion around to whom the RHAs are ultimately accountable, the public or the provincial Minister of Health.Footnote 13 It may also relate to resource constraints. Still, many RHAs have tried at times to engage the public through various methods, including community advisory boards, public members on committees, surveys, focus groups, interviews and town hall meetings. Footnote 14

The federal government's Science and Technology Strategy sets out recommendations for the three granting councils to enhance accountability and value for money. As part of these recommendations, CIHR (along with NSERC and SSHRC) is expected to seek out more business and community representation for its governing bodies to ensure that our investments reflect Canada's broad economic and national interests. Including this diverse representation on our governing bodies will improve our "responsiveness and accountability to the government, research community, and wider public." Footnote 15

Despite the admirable examples of CE described in this section, there is a lack of high-quality evidence of the effectiveness of CE, due to a lack of formal evaluation, both in Canada and abroad. The evaluation gap for implemented programs has been documented in various studies, including one by the OECD (2005)Footnote 16. Furthermore, Julia Abelson (2007)Footnote 17 points to the need for rigorous public participation evaluation research. Efforts to use research evidence to inform public involvement decisions are not systematically integrated into public involvement strategies and implementation.

2.2.2 A review of CIHR's Institutes and Branches

In preparing this Framework, CIHR conducted an internal survey, asking its Institutes and Branches to categorize their CE activities according to Health Canada's five levels of public involvement (see Appendix 1). The survey revealed that almost two-thirds of those interviewed (11 of 17) thought that a CE Framework for CIHR is 'very important', while 6 rated it as 'somewhat' or 'possibly' important; no one indicated that this was 'not important'. Indeed, the survey revealed that CIHR's Institutes and Branches have already demonstrated admirable leadership and expertise in their initiatives and activities in the following categories (see also Table 1, Appendix 1):

  1. Governance: i.e., involvement with decision-making bodies (e.g. members of standing committees, membership in peer review panels, task forces and working groups of the Institute Advisory Boards);
  2. Collaborations with pre-existing or new partners, such as voluntary health organizations, non-governmental organizations (NGOs), and science/youth outreach non-profit organizations.
  3. Consultations for specific contexts: e.g. the development of strategic plans and priority setting, the identification of research questions for specific initiatives and subsequent funding opportunities, involvement in the development of policies and guidelines and participation in activities relating to knowledge translation, including integrated KT funding programs (such as Partnerships for Health System Improvement, Knowledge to Action and Synthesis Grants) and community-based research programs.

Analysis of our internal survey and its resulting inventory reveals that most activities involve consultations with targeted audiences described in the Citizen typology (Section 2.1.1) representing citizens who are personally affected (such as patients/health consumers, general public) and groups (both primary and secondary), such as voluntary sector organizations whose stakeholders are volunteers, patients, advocates and members of the public. Some of these targeted audiences are also 'engaged' as members of permanent committees, task groups and/or community-based research peer and merit review committees, or with networks for clinical trials. Most of these consultations are undertaken for strategic planning or to inform research initiatives.

While it is not the primary focus of this Framework, the catalogue of activities found in Table 2 in Appendix 1 provides an overview of those designed principally to communicate information to targeted audiences within the scope of public outreach. Many of these communication/outreach activities involve the use of newsletters, reports, web posts and/or media interviews and public speaking engagements. These activities can also include organizing meetings for multiple stakeholders, including the public, and are often designed to promote science literacy within various target audiences or to educate the general public.

2.2.3 A review of the Government of Canada's Health Portfolio

As noted in the Introduction, PHAC and HC are in the process of implementing or restructuring their centres of expertise for public involvement. The range of resources currently being offered includes training courses, which are also available to CIHR employees (see Appendix 3 for an example), and learning opportunities within a HC public involvement experts network. The resources, including policies and frameworks, offer CIHR some relevant examples that can be tailored to CIHR's culture and aims. For example, the Health Products and Food Branch has developed a Policy on Public Input for the Review of Regulated Products (2007). The policy defines the various types of input that are considered, for instance, in the safety and effectiveness of a regulated product. It sets out parameters and methods for ensuring that public views are considered in dialogues pertaining to complex issues involving scientific or technical information while balancing societal values, habits and traditions that may influence the safe use and effectiveness of a product. This policy is of particular relevance to CIHR as it offers criteria and guidance for involving the public in decision making related to scientific topics. Health Canada has implemented a web portal to direct the public to opportunities for participation in consultations, primarily for regulatory policies. The website provides information about the type of activity, a listing of target audiences (including general public, health professionals, industry, patient groups and community groups), the timeframe, location and details for registration.Footnote 18

Other departments and agencies within the Government of Canada are also developing opportunities for engagement. For example, the Consulting with Canadians websiteFootnote 19 offers a range of opportunities to participate in consultations initiated by a number of federal departments. The Canada School of the Public Service also offers a course entitled "Public Consultations and Citizen Engagement", which features skill development and effective techniques. Another new course for managers, entitled "Engaging Citizens, Partners and Stakeholders",Footnote 20 is being offered as well, designed to help managers employed in the public service re-think engagement in the context of public interest, identify and understand the players in complex systems, achieve results through engagement and offer new ideas on engagement in civil society.

A very relevant and compelling argument in favour of citizen engagement appeared recently (2008) in the Canadian Medical Association Journal that addresses the need for public engagement in health care priority-setting.Footnote 21 The authors respond to some prevalent arguments against greater public engagement and address these in their Table 1, which has been copied here in its original form from their article:

Table 1: Perceived barriers to public engagement in setting health care priorities
Barrier Response
Members of the public are not objective - they have an inherent personal bias and cannot represent interests other than their own
  • This concern is applicable to all participants in priority setting
  • Members of the public are not expected to be objective scientific experts, but rather to participate in value-based deliberations
Members of the public are not well enough informed to contribute to priority setting in a meaningful way
  • Members of the public are experts in the lived experience of using the health care system and offer insight into the values and beliefs of the public at large
Most members of the public do not identify themselves as appropriate people to be engaged in priority setting
  • Some members of the public are interested in being involved under appropriate circumstances
Members of the public involved in priority setting will not be representative of the public
  • Fair-minded people from all relevant constituencies need to be at the table, participate in deliberations and articulate relevant values. They need not represent all sectors of their communities
Involving members of the public will make decision-making too protracted
  • Some methods of public involvement (e.g., appointing public members to decision-making committees) will have no impact on the time taken
  • If the necessary time is not taken to obtain genuine input from stakeholders, more time may be spent later addressing objections to the process and outcome

These responses to the "perceived barriers to public engagement" are important points to keep in mind as CIHR moves forward with its own CE activities.

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