CE Handbook - Bibliography and Appendices

[ Table of Contents ]

Bibliography

Abelson J, Forest PG, Eyles J, Smith P, Martin E, & Gauvin FP (2003). Deliberations about Deliberative Methods: Issues in the design and evaluation of public participation processes. Social Science and Medicine, 57(2): 239- 251.

Bruni RA, Laupacis A, Martin, DK, Priority Setting in Health Care Research Group. "Public engagement in setting priorities in health care." Canadian Medical Association Journal, 2008.

Canadian Environmental Assessment Agency. Public Participation Guide: A Guide for Meaningful Public Participation in Environmental Assessments under the Canadian Environmental Assessment Act. May 2008.

CIHR Knowledge Translation Tutorials, A Guide to Researcher and Knowledge-User Collaboration in Health Research.

CIHR Stem Cell Oversight Committee. Terms of Reference. June 2008.

CTSA Community Engagement National & Regional Workshops, National Institutes of Health/National Center for Research Resources, Centers for Disease Control and Prevention (CDC), and the Association for Prevention Teaching and Research (APTR). Resarchers and Their Communities: The Challenge of Meaningful Community Engagement, Best Practices. Cooperative Agreement No. U50/CCU300860.

Hampton, Chris. The Community Toolbox: Developing an Evaluation Plan (The Community Tool Box is a global resource for free information on essential skills for building healthy).

Health Canada Policy Toolkit for Public Involvement in Decision Making, Corporate Consulation Secretariat, Health Canada (2000).

Health Research Roadmap: Creating innovative research for better health and health care. CIHR's Strategic Plan 2009-10 - 2013-14.

Ismail, Sharif. Participatory Health Research: International Observatory on Health Research Systems. The RAND Corporation. 2009.

Lukensmeyer, C. and L. Hasselblad Torres. Public Deliberation: A Manager's Guide to Citizen Engagement. IBM Center for The Business of Government. February 2006.

Office of Community-Based Research, University of Victoria. The Funding and Development of Community University Research Partnerships in Canada: Evidence-Based Investment in Knowledge, Engaged Scholarship, Innovation and Action for Canada's Future. May 2009.

Parry, David, Jon Salsberg, and Ann C. Macaulay. Guide to Researcher and Knowledge-User Collaboration in Health Research. CIHR online Knowledge Translation Learning Modules. Developed for CIHR by Participatory Research at McGill (PRAM). 2009.

Pruitt, Bettye and Philip Thomas. Democratic Dialogue — A Handbook for Practitioners. Canadian International Development Agency, IDEA, UNDP and GS/OAS. 2007.

Reardon, R., Lavis J., Gibson J. From Research to Practice: A Knowledge Transfer Planning Guide. 2006.

Sheedy, Amanda. Handbook on Citizen Engagement: Beyond Consultation. Canadian Policy Research Networks. March 2008.

Straus, Sharon, Tetroe, J and Graham, I.D. Knowledge Translation in Health Care: Moving from Evidence to Practice. Wiley-Backwell. 2009

The Clinical and Translational Science Award (CTSA) Consortium's Community Engagement Key Function Committee and the CTSA Community Engagement Workshop Planning Committee. Researchers and Their Communities: The Challenge of Meaningful Community Engagement, 2009.

Appendices

Appendix 1: CIHR's Guiding Principles for Citizen Engagement

Principle Rationale Recommended Criteria
Working with citizens will add value to the program or project. Soliciting citizen input should be done with purpose–not just for consultations' sake. Plans for CE should present a rationale for including citizens, the need for their input, and the commitment for how this input will be used in decision making.
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. CE activities should use methods that will facilitate informed participation and meaningful discussion. This practice will enable participants to listen to each other and build agreement.
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 taxpayer dollars that support health research. Explanations about how decisions are made (and the information on which they are based) should be provided to citizens. CIHR staff should also be proactive in sharing information and in communicating how citizens' views were considered.
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. All CE activities should be designed with special attention to which citizens should be included in the process—especially affected groups and populations. Activities should also be planned to meet accessibility requirements.
Citizens 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. Participants should be provided with adequate (and relevant) background information, written in plain, accessible language.

Appendix 2: Characteristics of Deliberation Face-to-Face and Online

Feature Face-to-Face Online
Identity In addition to physiological factors, participants are generally asked to introduce themselves as part of trust building. Users provide as much information as user/designer wishes yr x. shared with the group.
Conversation balance While similar discussion patterns can and do emerge, the role of the facilitator has greater force in bringing everyone into the discussion. Conversation is driven by relatively few posters. While there is always a "main stage" for group discussion, numerous sub-conversations arise.
Timing Participants talk to each other "live," or in real time. Most online deliberations are asynchronous, which means participants can drop in and out of discussion at will, regardless of time.
Observation It is difficult, although not impossible, for researchers and observers to remain unobtrusive. Guests and researchers can observe the proceedings of online deliberation unnoticed and in very large numbers.
Attention A high value is placed on active listening by all participants. Reading comprehension replaces listening skills. Users must possess basic functional literacy to acquire knowledge.
Research It is extremely difficult and cost-intensive to capture data. Substantial interpretation is often required to condense documentation. Computer mediation renders discussion recordable, quantifiable, and interpretable.
Timeline While many methods are extended over time, most rely upon a fixed, much shorter time frame for discussion. Often takes place over several weeks.
Resources A weakness is the lack of information resources to address concerns as they arise. Users can access unique information at any time to enhance quality and content of discourse. Information can be verified in real time.
Environment In general, participants have little influence over the shape of the physical environment. Users can often influence the look, feel, and content of the online environments, while joining from a physically comfortable location.
Location Participants must travel to a central, physical locale. This naturally excludes some citizens. Ability of users to communicate is not limited to geographic constraints.

Appendix 3: Presentations and Forms for CIHR`s Community Reviewers Program (Case Study 1)

The following materials and presentations have been developed by the Programs, Planning and Process Branch to help prepare each group of stakeholders for the effective and meaningful involvement of community reviewers in CIHR`s peer review process. Copies of each presentation will be made available from the Partnerships and Citizen Engagement (PCE) Branch Citizen Engagement shared drive.

  • PowerPoint information presentation for the program delivery coordinators and officers (contains program objectives, selection criteria, etc.)
  • PowerPoint orientation presentation for the new community reviewers
  • Policies and responsibilities document for Grants Committee members (emailed to all members including community reviewers prior to meeting)
  • Community Reviewer Feedback Form (that community reviewers fill out after the meeting)
  • Community Reviewer Observation Form
  • Evaluation Questionnaire completed by chairs and deputy directors (based on community reviewers' participation at the meeting)
  • One-page program overview that is emailed to the deputy directors and chairs prior to the meeting, and inserted in all committee members' folders at the meeting

Appendix 4: Material Sent to New Members Serving on Committees with the HIV/AIDS Community-Based Research Program (Case Study 2)

"Community-based research" refers to research processes that are, to various degrees, driven by or responsive to the needs and interests of a specific community. Community-based research is a form of research in which principles of community involvement and collaboration are applied using scientifically accepted research methods. The research must demonstrate direct community involvement, community relevance, equity in partnerships, and methodological rigour.

Background

In April 2004, the HIV/AIDS Community-Based Research (CBR) Program was transferred from Health Canada to the Canadian Institutes of Health Research. CIHR, led by the CIHR Institute of Infection and Immunity and supported by the CIHR Institute of Aboriginal Peoples' Health, has developed the CIHR HIV/AIDS CBR Program, which will continue to support research and capacity-building initiatives of relevance to communities engaged in the fight against HIV/AIDS.

The HIV/AIDS CBR Program funds capacity-building initiatives and research projects in two streams—Aboriginal research and general (non-Aboriginal) research.

Funding Community-Based Research

The first request for applications in the HIV/AIDS CBR Program was released in November 2004. A total of 54 applications were received-21 in the Aboriginal stream and 33 in the general stream, and a total of 26 were approved for funding.

The second launch of requests for applications in the HIV/AIDS CBR Program occurred in June 2005. A total of 35 applications were received—10 in the Aboriginal stream and 25 in the general stream; a total of 17 were approved for funding—5 in the Aboriginal stream and 12 in the general stream.

The third launch of requests for applications in the HIV/AIDS CBR Program occurred in June 2006. A total of 34 applications were received—10 in the Aboriginal stream and 24 in the general stream. Of these, 18 were approved for funding—5 in the Aboriginal stream and 13 in the general stream.

Information on current funding opportunities in the HIV/AIDS CBR Program and other areas of infection and immunity research is available on the CIHR III Funding Opportunities page.

CIHR HIV/AIDS Community-Based Research Steering Committee

The HIV/AIDS Community-based Research Steering Committee was established in June 2006 to help guide the future development of the HIV/AIDS Community-Based Research (CBR) Program and make recommendations to the CIHR HIV/AIDS Research Advisory Committee (CHARAC) and CIHR regarding future community-based research requests for applications. This committee will help to guide the program and ensure the goals of the HIV/AIDS CBR program are supported by appropriate policies and programs.