A handout placed on a table with other flyers at the recent Congress of Epidemiology in Montreal  last summer has provided a lead to an interesting new initiative underway at the Canadian Institutes for Health Research (CIHR).

The Canadian research funding agency appears to be in the forefront among science agencies in recognizing the potential importance of having citizens participate in its research processes. The agency is on the record stating that “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.”

Resources

In addition to the values statement, CIHR has prepared a brief Framework on citizen engagement which includes a definition, a typology, and guiding principles. Also, a Citizen Engagement Handbook provides a matrix of approaches that can be implemented and a decision tree model which gives a checklist of questions that should be answered in planning any citizen engagement activity.

Key questions that should be asked revolve around the purpose of the public engagement, at what stage in the decision lifecycle scientists are expecting citizens to consult, what type of contributions scientists are expecting from citizens, and what type of interaction with citizens is desired.

Booklet

The agency’s most recent contribution of useful resources for public engagement is a booklet for citizens entitled “Health Research in Canada and You”. According to Kathryn Andrews-Clay, Director of Partnerships and Citizen Engagement Branch in the CIHR Knowledge Translation and Public Outreach Division, the 20+ page booklet was prepared in response to public demand. It describes CIHR structure, programs, and processes in clear language for laypersons and it presents a strong invitation for citizens to get involved to help make decisions throughout the research process. In a chapter entitled “How We Can Work Together” CIHR defines citizen engagement (meaningful involvement in decision work), why it is important (it makes research relevant, accountable, and transparent), and how to do it (serve on committees, help in planning, pick priorities, determine what is relevant, and help disseminate research findings).

Despite these achievements, an international review panel carrying out a review mandated every five years of the CIHR concluded this summer that  “…the full engagement of and participation by consumers and community is significantly underdeveloped in Canada” compared with other English speaking western democracies. The panel made several recommendations to the agency, including several to increase the public’s participation in all of the agency’s research processes.

In its report, the international panel, headed by former NIH Director Elias Zerhouni, the group called for more public engagement to help put knowledge translation into practice and for help with research advocacy and priority setting. To help buttress their recommendations on the importance of citizen engagement, the panel quoted Alan Leshner, President  of the American Association for the Advancement of Science, writing in the Chronicle of Higher Education that institutions should redefine faculty success to include public engagement.

Lip Service

However, many experts in the field of public or citizen engagement recognize that the value of public participation is still contested even in places where it is practiced, not only in Canada but in other countries where lip service is often the norm rather than meaningful citizen involvement in decision making. 

The role citizens should play in science is not clearly defined and the value added of citizen input is not well understood.

The question which often arises about the public is --what do they know?—implying that the conduct of science or the making of science policy decisions is all about facts and evidence when in reality other non-technical considerations such as feasibility, values, and costs are also in play in making technically sound and relevant science or research policy related decisions. And citizens are fully qualified to enter into these discussions.

NRC Literature Review

In the most extensive literature review of the evidence about the efficacy of public participation, the National Research Council of the National Academies of Science in 2008 produced findings which are broadly applicable to health and
many scientific areas outside of

environmental assessment which was the focus of the review. The NRC concluded “when done well, public participation improves the quality and legitimacy of a decision and builds the capacity of all involved to engage in the policy process.” It further called public participation “a requisite of effective action, not merely a formal procedural requirement.”

Recommendations

At least four of the panel’s sixteen recommendations involved changes
 or expansions in the role of the public vis à vis the agency, including a call to include members of the public on the Governing Council, increasing public and patient participation in all decision making processes, creating an office of public and governmental affairs, and creating programs to improve knowledge translation. All of these functions require information as well as considerations of which values to make paramount in a decision.

To access the useful CIHR resources, visit the following sites:

Framework

http://tinyurl.com/3j4mkj8

Handbook

http://tinyurl.com/3cbhvj2
 

Booklet

http://tinyurl.com/3vo4nmk
 

International Panel Report

http://tinyurl.com/3qoxmtn