CIHR’s Framework for Citizen Engagement - Section Three: The CIHR Citizen Engagement Framework

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3.1 Introduction

CIHR's CE Framework establishes guidelines for standard practices whereby citizens can be engaged at the higher levels of the involvement spectrum, as defined in Health Canada's public involvement continuum. These practices primarily revolve around Institute and corporate strategic plans, research priority setting and governance structures. A collaborative decision-making model involving citizens ensures that CIHR's research agenda is relevant to them.

The CE Framework promotes mutual learning and understanding in order to seek a better alignment between CIHR and the values and perspectives of Canadians. This engagement will lead to improving the relevance and translation of research into practice to improve citizens' quality of life. It will also help to validate the intent and importance of proposed research projects and ensure that they are well explained. Lastly, engaging citizens will enable CIHR to better communicate the merits of health research by helping citizens understand the value of CIHR's investments.

3.2 CIHR Citizen Engagement Value Statement

The following value statement is intended to promote an overall understanding of the role and importance of citizen engagement for CIHR:

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.

3.3 Guiding Principles

CIHR's CE Framework will be guided by the following principles:

Principle Rationale
Working with citizens will add value to the program or project. Soliciting citizen input should be done with purpose – not just for consultations' sake.
Mutual learning/understanding will build trust and credibility. CIHR can learn from citizens in the same way that they can learn from us – and from each other. Understanding and valuing the views, concerns, and experiences of citizens will build trust and credibility on all sides.
Openness will enhance transparency and accountability. Sharing information about CIHR's core business and decision-making processes will enable CIHR to demonstrate the value (and impact) of the tax-payer dollars that support health research.
CIHR will be inclusive in its approach to citizen engagement. Barriers that prohibit or diminish engagement with a wide range of groups do exist; recognizing and addressing them will improve the diversity of CE representation and will enhance the quality of the feedback received.
Citizen will be supported to ensure their full participation. Orientation tools and sufficient support are needed to help citizens contribute fully to the discussions and decisions being considered.

3.4 Areas of Focus

Fig. 5: The Four Areas of Focus
Fig. 5: The Four Areas of Focus

Figure 5 captures the four categories that the Framework outlines as major areas of focus for CIHR to invest more effort in gathering systematic input from citizens. These focus areas fall within the scope of the activities that CIHR's Institutes and Corporate Branches have already used to engage and partner with citizens. These areas have been numbered on the diagram and are explored in more detail below with recommended actions for enhancing representation of citizens.

1: Enhance citizen representation on CIHR's Boards and Committees

Membership on CIHR's decision-making bodies, including Standing Committees of Governing Council, sub-committees of the Scientific Council and Institute Advisory Boards, provides a mechanism for mutual learning and understanding, for improved trust, transparency and collaborative decision-making. Participation of citizens on CIHR committees and boards can encompass both advisory and decision-making roles.

Recommended actions:

CIHR should increase the engagement of citizens in governance roles on its existing structures as well as in advisory roles in research priority-setting, peer-review and knowledge translation committees.

Governance:

  • Provide guidance to Chairs of CIHR's Standing Committees and the Institute Advisory Boards on how to engage these representatives actively and meaningfully.
  • Creation of a Citizen's Panel: The external scan of similar funding organizations, described earlier in Section 2, suggested models for developing ongoing relationships with citizens who are characterized by shared agenda-setting and collaborative decision-making. The Public Panel of the United Kingdom's Medical Research Council (MRC) recently underwent a formal evaluation and has now evolved to become a virtual panel coordinated by a staff member of the MRC's public involvement team. The staff match suitable lay people from the Panel to specific MRC activities in which a patient or public perspective would add value. The panel consists of individuals with an interest who can provide a lay perspective – perhaps by association with a health charity or through personal experience. These people are invited to provide advice and guidance to the MRC on a project-by-project basis. These are usually one-off projects that run for a limited period and usually address a particular health need, emerging public health concern or monitor the progress of research and knowledge translation projects such as clinical trials or national initiatives such as the UK Stem Cell Bank.

    CIHR should adopt similar model for its own Citizen's Panel. Members of the Panel may be invited to give presentations to lay audiences on the research funding process and present at appropriate Café Scientifiques. The Terms of Reference, recruitment, screening, appointment and secretariat support would be developed by the PCE Branch using tools such as the CIHR Volunteer Application process that is already available on CIHR's website (for Community Reviewer and IAB recruitment, etc.). CIHR is already demonstrating some capacity of activities which are building a foundation of what has been coined the "already-engaged"22 citizens.
  • The Community Reviewers program is managed by the Research Portfolio as it serves as a vehicle for receiving input from citizens during the peer review process. Continued support is required to meet the goal to expand the number of panels in which community reviewers participate from 25 (currently) to 50% of the open operating grants program panels.

2: Ensure that citizens' perspectives inform corporate and Institute strategic plans, strategic priorities, policies and guidelines

CIHR and its Institutes should include a plan to proactively seek citizen input into the development of any new direction or initiative as early as possible. Consultation with the public during the development of Institute strategic priorities will serve to gather information surrounding public values and ethics, to consult and explore/reconcile ideas or weigh priorities, and to establish trust and credibility. A statement of commitment should explain how the results of the exercise will be integrated in the final plan/direction/initiative and should make CIHR's commitment to the process clear (or the commitment of the Institute Scientific Director, IAB, etc.).

Recommended actions: CIHR's Institutes and Branches use a variety of methods to seek public input, including broad-based surveys; meetings with targeted audiences; forums that include all stakeholders; workshops; telephone surveys and focus groups; publicized consultations for input through online surveys; and small group dialogue sessions. These methods should be used to facilitate:

  • proactive involvement of citizens in the development of all Institute strategic plans;
  • proactive involvement of citizens in the early planning of CIHR's next strategic plan;
  • involvement of our already-engaged citizens in preparing for the next International Review and in the review itself.

3: Develop tools to incorporate citizens as a category of targeted audiences in the development of research priority-setting approaches used in Integrated Knowledge Translation, including Community-Based Research

The integrated Knowledge Translation (iKT) research process, which includes community-based research, provides models for interested Institutes with strategic initiatives that involve stakeholder consultation in their program tools. Relevant Requests for Applications (RFAs) would stipulate the involvement of citizens as a criterion for CIHR funding, along with specific information for research applicants. For example, the RFA could include the following step in its application requirements: "Where appropriate, indicate how you are involving citizens actively in any of the stages of your research (e.g. in developing the research proposal and/or taking account of likely public reaction to your research). State what efforts you have for disseminating your results to citizens."

iKT requires a collaborative and participatory approach to research that is action-oriented and is focused on solutions and impact. Knowledge users and researchers are working together to shape the research process - starting with collaboration to set the research questions, decide the methodology, get involved in data collection and tools development, interpret the findings and help disseminate the research results. In iKT, which includes community-based research models, the affected community helps to define the research question(s) to ensure relevance to the community. The affected community can also be involved in conducting the research and promoting active participation in the development and implementation of a dissemination strategy for the results.

Recommended actions:

  • Develop funding opportunities to increase researcher capacity for CE. There could also be opportunities to develop new research domains in this area and provide additional funding such as "Meetings, Planning and Dissemination" grants.
  • Pilot a CE component within iKT research tools offered by the Knowledge Translation Portfolio, such as Partnerships for Health System Improvement (PHSI), the Knowledge Synthesis Initiative, the Knowledge to Action Initiative, Strategic KT initiatives funded through Institutes, the Proof of Principle (POP) and the Meetings, Planning and Dissemination grants. This component would help researchers to develop collaborative relationships and grant proposals. The PCE Branch can offer guidance and decision-making tools for careful consideration of the potential categories of citizens (as defined in the typology in Section 2) to be included as 'knowledge users' in the RFA descriptions.

4: Increase the effectiveness of Knowledge Dissemination and Public Outreach

This objective is one in which CIHR is concentrating much effort in order to communicate the benefits of health research to Canadians, to improve health services and ultimately improve the health of Canadians. As demonstrated in the survey results in Table 2 of Appendix 1, the efforts undertaken to achieve these objectives involve bringing together researchers with a variety of citizens, including voluntary health sector organizations, the media, parliamentarians, youth and the general public. The Communications and Marketing Branch is leading in the efforts to reach the media, parliamentarians, youth and the general public with such programs as the media workshops, Café Scientifiques and Synapse. The Institutes and branches are involved with more KT and outreach activities as part of their ongoing engagement efforts with voluntary health sector organizations. Both the media and the voluntary health organizations are important partners to reach the general public.

Recommended actions:

  • Support enhancements to CIHR's website (CIHR's Web Strategy) with a new feature that offers opportunities for Public Involvement in its main navigation menu. This can eventually provide a comprehensive list of both current consultations opportunities and published reports of past consultations. The PCE Branch will also develop specific web pages about CE at CIHR.
  • Develop related resources, such as a guide (written in lay language) that outlines the nature of CIHR. It could offer information about ways that the general public can engage (become involved) with CIHR and its Institutes.
  • In consultation with the Communications & Marketing Branch, develop opportunities to link stories about the impact of health research to opportunities to participate in Institute- or Branch-led consultation exercises (and vice-versa), ensuring that all material is written in comprehensible lay language. This cross-linking will increase visibility of both CE at CIHR and the value of investments in health research.

3.5 Coordination and Oversight

Implementation of CIHR's CE Framework is the responsibility of all Institutes and Branches of CIHR. However, the PCE Branch will exercise a coordination and oversight role, facilitating CE activities and providing guidance to all areas of CIHR.

As part of this facilitation and guidance role, the branch will be developing a Citizen Engagement Handbook and Resource Centre. This tailored toolkit will assist the Institutes and Branches in undertaking successful recruitment and involvement of citizens, and will include learning opportunities for staff and resource materials. Appendix 4 provides an example of many guidelines developed for assessment and matching methods.

Staff professional development will be critical in order to ensure that CE processes are managed well. There are, unfortunately, many examples of a distinct lack of feedback loops in which citizens take part in decision-making meetings and/or consultations but are not provided with results of these exercises or how their input was used. This simple oversight contributes to distrust of and cynicism about these kinds of exercises.

Evaluation methods for CE programs will be included in the toolkit, such as Health Canada's public involvement planning guide, which features critical questions to consider during the development phase of an overall CE plan so that objectives can be effectively measured.

The Handbook and Resource Centre will also include:

Tools to help the public engage with CIHR: Tools similar to the Resource Pack of Australia's NHMRC will inform citizens and researchers about effective methods for engaging their target audience(s). In addition, a background document, written in lay language, that explains CIHR and health research can be made available on our website and distributed to partner organizations and libraries. Such a document can incorporate information about the research process, how research is regulated, communicating the results of research, and research methods. The guide will explain what systematic reviews are and information about the Cochrane Collaboration and the Cochrane Library23 to guide citizens to resources. This guide could also be made available at meetings that include the public. Furthermore, tools will include support for online involvement of Canadians from a CIHR web portal for the purpose of ongoing consultations and for feedback. Café Scientifique events designed for discussion on CE at CIHR will be developed as opportunities to let citizens know about how they can be involved in health research.

Tools to help the research community learn how to engage citizens: A resource guide will be developed and tailored for the research community to offer advice to researchers about the sort of information useful to citizens and the values that underpin their participation in health research. CIHR can collaborate with university institutions, such as Memorial University's Harris Centre, to offer outreach programs that promote science literacy and consult with citizens on specific policy questions. For example, the Harris Centre offers two different types of public policy forums that are open to the general public. There are no admission fees to the Harris Centre's public lectures, and parking for on-campus lectures is free of charge. A free reception is normally held after each lecture.24 Similar opportunities through CIHR could include involving citizens who are already engaged with CIHR as presenters from the 'public perspective'.

Tools to strengthen the role of Voluntary Health Organization Partners: As demonstrated in Appendix 1, CIHR is currently partnering for research and KT purposes with many of Canada's Voluntary Health Organizations (VHOs). CIHR views them as key stakeholders representing the interests of Canadian patients, consumers, advocates and volunteers, and to provide a 'lay' perspective on most of the IABs. These organizations can help CIHR to communicate research in ways that are meaningful to the public.

As evidenced in the literature review, VHOs often act as gatekeeper organizations that nominate or recruit interested and informed individuals for consultations. CIHR's voluntary sector partners can impart valuable knowledge and skills in the management of volunteers and the engagement of their stakeholders. CE is similar to volunteer engagement in that it involves the same principles of the volunteer retention cycle: recruitment, selection, orientation and training, evaluation, retention and recognition. Some of CIHR's VHO partners have acted as key advisors in the development of this framework.

The PCE Branch will continue to provide support and to build capacity for the network of voluntary and NGO Sector IAB members who are meeting regularly with the renewed commitment from the KT Portfolio. In addition, the PCE Branch will continue to nurture the relationship with the health charities and other voluntary sector partners by organizing meetings such as the National KT & Partnerships Roundtable Meeting (originally organized in 2007). Future endeavours may include the development of a website directory of organizations, such as research networks, VHOs, and clinical research collaborations that are offering opportunities for citizens to get involved.

3.6 Evaluation

The PCE Branch will develop an evaluation framework as a component of the tailored toolkit with the implementation of activities in the four priority areas that have been identified. CIHR can distinguish itself from other organizations currently undertaking CE activities through evaluation of the effectiveness of its activities.

Table 6: Evaluation of Citizen Engagement Activities

Objectives Outputs and Outcomes Evaluation Issues
1. New or modified strategic priority setting, strategic plans, policies and guidelines

Short term:

  • Citizen Engagement Framework
  • Network of contacts
  • Synthesis documents
  • CE toolkit and resource library
  • Increased CE at Institute and corporate level

Intermediate outcomes:

  • Increased connection between researchers and citizens;
  • Improved communication and engagement of citizens;
  • Increased capacity and opportunities for CE within the research cycle (RFA's encouraging CE) and governance structure;

Long term outcomes:

  • Consistent and cohesive CE engagement activities across CIHR;
  • Increased vehicles for knowledge dissemination;
  • Change in public attitude about CIHR;
  • Increased support for health research

Representativeness

Clear task definition & accountability

Equal opportunity to participate

Timeliness

Transparency

Communication of results of CE activity

Adequate resources

Coordination

Learning

Capacity building

Participant satisfaction

Influence on decision making

2. Integrated KT and Research Priority Setting
3. Membership on CIHR committees and boards
4. Knowledge Dissemination/ Public Outreach

  1. [1] Already-engaged citizens (a term that was initially coined at the CIHR CE consensus-building workshop in May 2008) are people who have contributed or who currently serve as IAB members (patients, advocates, voluntary sector representatives), Standing Committee members (Stem Cell Oversight Committee), Community Reviewers within the Peer Review process, members of the Knowledge Exchange Task Force with IMHA, members of the Community-Based Research Committees for the IAPH and with the HIV AIDS Initiative. Other activities may also apply.
  2. The Cochrane Library contains high-quality, independent evidence to inform healthcare decision-making. It includes reliable evidence from Cochrane and other systematic reviews, clinical trials, and more.
  3. Public Policy Forums. Part of the Harris Centres website.
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