Citizen engagement resources

The following list of Canadian organizations and links may provide you with an overview of the health-related citizen engagement initiatives that exist across the country:
  • CIHR Jargon Buster
    The aim of the CIHR Jargon Buster glossary is to build a context for understanding CIHR-related and health research terms in lay language. This glossary is intended for non-researchers, citizens, patients and caregivers involved in a variety of roles both in patient-oriented research and in other engagement activities, such as in CIHR committees. The focus of this glossary is on medical research in general rather than a specific disease or condition.
  • Health Canada: Healthy Products and Food Branch Public Involvement Framework
    The Healthy Products and Food Branch (HFPB) Public Involvement Framework is an overarching framework intended to guide public involvement activities within the Branch, for all stakeholder groups, across the full spectrum of HPFB's responsibilities.
  • Health Canada Policy Toolkit for Public Involvement in Decision Making
    The purpose of the Health Canada Policy Toolkit for Public Involvement in Decision Making is to support Health Canada's mission to maintain and improve the health of Canadians by providing direction for Health Canada employees on public involvement. The document affirms the department's commitment to public involvement. It provides principles, guidelines and information for the effective involvement of citizens in government decision making on health issues.
  • Canadian Policy Research Networks’ Handbook on Citizen Engagement: Beyond Consultation
    Handbook on Citizen Engagement: Beyond Consultation by Amanda Sheedy, University of Toronto, is intended to help individuals and organizations, especially in government, in developing strategies to engage citizens in setting priorities and in making decisions. It builds on CPRN experience to provide an overview of engagement practices and resources to help plan citizen engagement projects.
  • Community Based Research Canada is a network of people and organizations engaged in Community-Based Research to meet the needs of people and communities.
  • Canadian Health Services Research Foundation (CHSRF)
    One of CHSRF’s four priority themes is value-based decision-making and public engagement. The Foundation acknowledges that organizations need to do a better job of engaging and informing citizens, of involving the public in setting priorities for healthcare, and of including public values and priorities in making decisions.
  • "Consulting with Canadians"
    "Consulting with Canadians" provides you with single-window access to a list of consultations from selected government departments and agencies.
  • Health Charities Coalition of Canada
    The Health Charities Coalition of Canada (HCCC) is a collective authoritative voice of national health charities in public policy and health research issues that affect the health of all Canadians.
  • The Cochrane Consumer Network
    The Cochrane Consumer Network  is made up of fellow consumers who are committed to the philosophies of The Cochrane Collaboration and the importance of consumer participation in informed healthcare decision-making processes. The video found on this link describes how consumers and health care professionals from around the world are using the Cochrane Collaboration to improve health care practices.

The following international organizations may also be of interest:

  • International Association for Public Participation (IAP2)
    IAP2 is an international leader in public participation, whose members seek to promote and improve the practice of public participation in relation to individuals, governments, institutions, and other entities that affect the public interest.
    INVOLVE is a national advisory group, funded by the United Kingdom’s National Institute for Health Research (NIHR), whose role is to support and promote active public involvement in NHS, public health and social care research. The advisory group believes that involving members of the public leads to research that is:
    • more relevant to people’s needs and concerns
    • more reliable
    • more likely to be used
  • James Lind Alliance Guidebook
    The Guidebook provides step-by-step guidance to establishing Priority Setting Partnerships which bring patients, their carers and clinicians together to identify shared priorities for research into the treatment of specific health problems. Research on the effects of treatments is usually led by researchers or funders. This can mean that it can fail to address questions that matter to patients and to the clinicians to whom patients look for help. This is why the James Lind Alliance process focuses on patients and clinicians.

If you know of other organizations involved in citizen engagement or have links for additional resources, please contact us at

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