CIHR’s Framework for Citizen Engagement - Appendices

Strategic Plans

• broad-based consultations utilizing surveys and meetings with targeted audiences and communities that provided an environmental scan and perspectives for some of the Institute Strategic Plans

ICR's Research Alliance

• comprised of representatives from the National Cancer Institute of Canada (NCIC), the Canadian Association of Provincial Cancer Agencies (CAPCA), Health Canada and ICR. In May of 2001, this group sponsored a large working group meeting at which cancer researchers from all pillars, lay persons, survivors and potential partners, were convened to begin the process of defining research priorities for cancer research. As a result of this meeting, a web-based Delphi process was initiated to further refine the priorities and seek input from a broader population. Resulted in identification of 7-8 priorities for the Institute

IMHA on the Move I January 31-February 1, 2003

• a forum where stakeholders from across Canada (over 150) contributed to the fine tuning of IMHA's strategics plan

IMHA on the Move II October 2006

• a forum where CRCs from across Canada and stakeholders from western Canada (over 80) contributed to the planning, development and implementation of a national IMHA strategy - 2007-2013

Institute sponsored NGO Meetings

• 2 NGO Roundtables have been held in 2001 and 2002
• there are 100+ NGOs/VHOs who relate to INMHA
• workshop discussions and feedback was used to create the first strategic plan
• also used to address communications and partnering issues/opportunities
• Stakeholder Meeting planned for 2008 to discuss creative partnering

Peer Review Committees for Aboriginal Health Research

• all have an informed lay person

CBR Merit Review committees

• two categories: Aboriginal and general
• equal representation between experts and community reps
• 4 people responsible for the review of an application (2 academics, 2 community)
• * (In the CBR program, the Nominated Principal Investigator doesn't need to be an academic – but needs to pair up with an academic in the Operating and, at times, the Seed grant program – and the community organization can be the host institution and holder of the funds)

HIV Trials Network - 2007

• the Network gets a grant of $4.5 million per year
• the renewal application was very transparent
• consultation was done regarding what the objectives/goals of the Network should be
• 3/30 participants were community representatives
• all 3 reps were very strong; one could even be deemed the leading HIV research advocate in Canada
• the community representatives have access to a wide range of stakeholders

Community Reviewers Program: enhancing public and stakeholder engagement on CIHR's Peer Review panels by:

• reviewing lay abstracts to comment on the intent and importance of the research proposal & ensure the research is well explained;
• communicating the merit of investment in health research;
• individuals who are not currently academics or researchers, but who have a demonstrated interest in health and science. Spring (2008) the program will be increasing participation on panels from 15 to 25 community reviewers.

CIHR Guidelines for Health Research involving Aboriginal People

• involved Aboriginal Elders of First Nation, Inuit and Métis communities in a dialogue and consultation on traditional values and ethics with researchers and institutions built upon the ACADRE Network

National Placebo Initiative (2002)

• extensive consultations over 2 year span to inform Tri-Council policy decisions on the appropriate use of placebos in clinical trials.
• Innovative strategy to engage citizens with series of workshops, telephone surveys, and focus groups held across Canada.

CIHR's Privacy Best Practices for Health Research

• open and targeted consultations were conducted in 2004 on a draft document. The consultations were advertised widely and included in an opportunity for the general public to provide comments on an online survey and in small group dialogue sessions.

The international dialogue on trial registration

• Participation in the work of the Scientific Advisory Group (SAG ) of the trial registration platform (ICRTP) of the World Health Organization (WHO)
• Consumers are included in these dialogues; one consumer is a member of the SAG , while several consumers attend the Ottawa group meetings and signed the Ottawa statements

Advisory Group for Open Access Policy

• informed the policy on access to the research outputs such as publications, questionnaires, surveys, "outputs" or outcomes of the research grants to promote accountability, promote dissemination of research from publicly funded organizations
• Online survey targeted govt, research agencies, university decision-makers, librarians, charities, funders and general public.
• Multiple phases which include posting of draft policy online for replies – was seen as forward thinking
• Governing Council approved the policy March 2007
• Beginning Jan. 2008 researchers are to adhere to new responsibilities

Participation in NCEHR meeting to look at REBs for CBR (National Council on Ethics in Human Research)

• will look at Research Ethics Boards for Community-Based Research (not specifically HIV-AIDS)
• this meeting will involve a lot of community participants
• effectively, they are doing an environmental scan of the capacity of CBR REBs
• the results of this meeting and consultation will be reviewed to identify gaps

Aboriginal Capacity and Development Research Environments

• one of IAPH's first initiatives was to develop these centres of supportive research environments across Canada to facilitate and develop aboriginal capacity in health research.
• each centre includes a volunteer advisory board with majority membership from the aboriginal community.

Community Based Research Grants

• designed to collaborate and empower the targeted communities to work with researchers as full partners in the research process and to use the results to improve their quality of life.

HIV/AIDS Initiative Working Groups

• CHARAC (CIHR HIV/AIDS Research Advisory Ctee) engage community reps to gain broader perspective
• 8-12 people per working group; 1-2 community reps per group
• these groups develop RFAs (the perspectives feed into the type and focus of the opportunity)
• - 2006 – establishment of working groups model
• recruitment is fairly informal; generally, nominations/ recommendations come from researchers there were 2 face-to-face meetings/consultations (Prevention and HS/PH working groups) conducted in 2006. There was another face-to-face meeting conducted in 2007 for the HS/PH working group.

IA's Regional Seniors' Workshops

• involved five community consultations (Prairies, Yukon, BC, Ontario, Quebec and Maritimes) which involved over 250 senior citizens along with NGO representatives, practitioners, policy makers. Dialogue centred around current research in aging and how seniors could engage in identify their priorities

Mobility in Aging Strategic Research Initiative

• Developed in consultation with broad base of stakeholders including users: health practitioners, health institution administrators, public policy decision makers, front line educators, the media, health charities, persons living with diseases/conditions, consumers, family members and caregivers, the private sector and general public

Boys and Men's Health Seed Grant

• included consultations emanating from Canadian Conference on Men's Health at the University of Victoria. Multiple community members represented, both traditional and non-traditional advocacy groups

Gender, Mental Health and Addictions Initiative

• Current funding opportunity : Research user engagement early in the research cycle is critical to help identify policy/practice relevant research foci and potential interventions that will ultimately translate into mental health benefits. Evidence of input from, and commitment to, the proposed program of research by the relevant potential users such as policy makers, private (e.g. workplace), public and voluntary sector program administrators, clinical and public health practitioners, and/or community-based organizations.

OA Consensus Conference 2002

• a conference to set strategic research priorities in osteoarthritis for Canada. All stakeholder groups from across Canada (over 200) were involved in this activity including the Canadian public, decision/policy makers, healthcare providers, patients/patient groups, private sector, researchers.

Inflammatory Joint (IJD) Diseases Consensus conference 2003

• a conference to set strategic research priorities in IJD for Canada. All stakeholder groups from across Canada (over 200) were involved in this activity including the Canadian public, decision/policy makers, healthcare providers, patients/patient groups, private sector, researchers.

Consensus Conference on skin research 2004

• a conference to set strategic research priorities in skin research for Canada. All stakeholder groups from across Canada (over 60) were involved in this activity including the Canadian public, decision/policy makers, healthcare providers, patients/patient groups, private sector, researchers.

Bone and Joint Decade (BJD) International Consensus Conference 2005

• a conference to set strategic research priorities in Bone & Joint research for Canada and internationally. All stakeholder groups were involved in this activity including the Canadian and foreign public, decision/policy makers, healthcare providers, patients/patient groups, private sector, researchers. Over 40 countries were represented along with WHO representatives (over 250)

Summit for the Canadian Arthritis Standards of Care 2005

• a conference to set strategic research priorities in IJD for Canada. All stakeholder groups from across Canada (over 250) were involved in this activity including the Canadian public, decision/policy makers, healthcare providers, patients/patient groups, private sector, researchers.

Muscle: From Molecule to Mobility Consensus Conference 2006

• a conference to set strategic research priorities in muscle and rehabilitation research for Canada. All stakeholder groups from across Canada (over 90) were involved in this activity including the Canadian public, decision/policy makers, healthcare providers, patients/patient groups, private sector, researchers.

III Pandemic Preparedness Strategic Research Priorities

• Canadian Foundation for Infectious Disease had input in direction-setting workshop in 2005
• Task Group often work with lay representatives and researchers working with task group to develop Funding Opportunities

IG Symposium- Aboriginal cross-border collaborations

• Planning meeting for May 2008 to develop a modified model of committees with Aboriginal Researchers, with Community- Based Research standards. Including representatives from different aboriginal groups (to involve input from the communities).
• modified model of other Planning & Priorities committee

Funding to support Citizen Engagement (including patient involvement) IHSPR

• Spans 24 grants and awards including July 2007 – Fellowship in CE, Dec 2007 – CE – Access to Drug Care Policy

III Strategic Priority Setting

• meetings with invited NGO's to involved the wider community in 'Research Symposium' on "Auto-Immune" diseases

Lay Summaries (IMHA)

• work with researchers to develop lay summaries of research (Cochrane-matched)

Synapse – Youth Connection

• originated in Blueprint to collaborate with partners in the educational and science youth outreach non-profit organizations to create mentors for the next generation of health researchers by engaging children/youth in science discovery. Extensive environmental scan of best practices in Canada and abroad, focus group consultations informed the tools which were developed.

IBRO Science Schools

• This initiative involves research and education in developing countries. INMHA sponsors 2 schools per year (one in Africa, one in South America). The sponsorship is for 2-week intensive courses for PhD students or Post-Docs. Last year, the students were brought to Canada for a meeting; they gave presentations at the meeting and had a 1-week course afterwards

CIHR Institute Advisory Boards

• 1 – 2 members per board represent voluntary sector, consumers, advocates

Stem Cell Oversight Committee

• public representative is full member of this committee

HIV/AIDS Research Advisory Committee

• subcommittee of CIHR-III's IAB, but essentially functions as an IAB itself
• 2/12 members are community representatives, who are appointed by a nomination process
• strong push from the HIV/AIDS research community to create this initiative, so community interest (academic and otherwise) is very keen
• their terms last 2 years (with the possibility of renewal for another 2 years)

HIV/AIDS CBR Steering Committee (Standing committee)

• community reps needed for depth of experience (CBR truly engages the community throughout the research process (from deciding what the focus of the research will be to the dissemination of the research results; has several CBR RFAs)
• 8-12 people; equal representation from experts/academics and community reps
• 2 funding streams: 1. General, and 2. Aboriginal (also equal representation between Aboriginal and non-Aboriginal people for that committee)
• modeled after other countries recruitment, based on recommendations from the community (HIV Networks, etc.)

IMHA IAB sub-committees

• 1-2 voluntary sector/lay representative on the IAB
• each sub-committee of the IAB is represented by at least one patient representative

PROCTOR

• Public reporting of Clinical Trials Outcomes and Results; the purpose PROCTOR is to identify issues and concerns regarding the public reporting of results; consumers are one of invited constituencies and a special analysis is done

IMHA Knowledge Exchange Task Force (KETF)

• Was spearheaded by former IAB member Flora Dell
• innovative approach to creating a communication pathway linking researchers and key stakeholders, including clinicians and patients.
• Members become Research Ambassadors for the program and expedite dissemination of findings to their respective organizations and communities.

Strategic Training Initiatives in Health Research (STIHR)

• 3 of our annual meeting of STIHRs included KT on the agenda – first agenda item was on what is KT? Second was a day/breakout pilot conducted by Cochrane Collaborations and the 3rd meeting was a full-day pilot on 'train the trainer' in KT. KETF research ambassadors (patients) participated in this pilot. STIHR Directors and trainees from across Canada are main participants in these meeting (70-80 participants)

Stakeholder Database IMHA

• (IMHA) believes that establishing consistent, open, two-way communication with stakeholders is critical to its success. Stakeholder database enables the Institute to send pertinent information about current programs and activities, but will also enable two way communication.

Canada on the Move

• Kellogg's began putting pedometers in their Special K cereal, which led SD Diane Finegood to the idea that the Institute should try to link Kellogg's with research ("Donate your steps to research!");
• People could log onto the website and register as a participant
• the website informed/educated people re: the importance of walking;
• discussion was done using electronic mechanisms;
• researchers used the website as a starting point (data) to generate further research – integrated KT;
• national perspective, high profile, innovation, crossing health promotion + research;
• resources: outside source for website (about $100K per year)
• other companies copied the idea ("America on the Move", etc.)

Ministerial Advisory Council of HIV/AIDS

• really increased the credibility, accountability and validity (includes several Canadians living with HIV/AIDS.)
• The main focus of its work is on evaluating and monitoring the Federal Initiative, championing current and emerging issues, and offering a vision for the long-term.

KT National Roundtable with VHOs 2007

• The focus for the day was to develop a common understanding between researchers who have received CIHR KT Funding and Voluntary Health Sector partners; this understanding allowed all the participants to discuss knowledge translation best practices and to explore common goals for potential collaborations.

Canadian Genetic Alliance Organization

• modelled after the US based organization. Currently being developed as an information provider to multiple stakeholder groups including families/patients with genetic diseases. It will build capacity in advocacy organizations and educate policymakers by leveraging the voices of these groups. Web site is tailored to lay people. Creates a more powerful voice for advocacy to govt.

Priority-setting workshops co-organized with researchers and partner organizations.
These include:

• 2002 Tobacco Summit
• 2003 Workshop on Alcohol and Illicit Drugs
• 2003 Workshop on Problem Gambling
• 2004 Workshop on Early Life events
• 2007 Consultation on Research Priorities for Substance Abuse and Concurrent Disorders
• 2007 National Autism Research Symposium: an effort was made to include grassroots representation from the autism community (parents, advocates, treatment professionals) and to provide an opportunity to hear some of those whose voices may not yet have been heard publicly. Autism workshop communications materials created with Health Canada, PHAC, and CIHR Communications Branch

Institute sponsored NGO Meetings

• 2 NGO Roundtables have been held in 2001 and 2002
• there are 100+ NGOs/VHOs who relate to INMHA
• workshop discussions and feedback was used to create the first strategic plan
• also used to address communications and partnering issues/opportunities
• Stakeholder Meeting planned for 2008 to discuss creative partnering

Representation at Voluntary Sector and NGO Workshops/ AGMs/Forums

• INMHA staff and IAB members participate in numerous in priority-setting meetings/exercises
• INMHA gets involved to help set and implement the organization's priorities (not just vice-versa)

INMHA Annual Meeting

• NGOs are invited to annual meetings (INMHA originally paid for an attendee from each NGO who wanted to attend). The meetings included sessions specifically for the NGOs to network, discuss partnerships and mutual issues, etc., as well as to attend sessions that involved researchers, consumers, and policy makers.

IPPH Joint public forums with various organizations

• such as CPHA conference
• implement "Public Forum" style events with presentations (intended to attract public to learn about an issue re: public health)
• David Suzuki Public Forum: 'Our Environment is Our Health' with the Ontario Public Health Association (involved an open question panel)

Institute of Genetics Voluntary Health Organizations (VHOs) Working Group

• mandate is to cultivate a partnership between VHO's from genetic diseases community and IG. The working group will influence the development of the IG as an integrative health research Institute and promote public engagement among stakeholders.

Listening for Direction II (2004)
Listening for Direction III (2007)

• Responding to public expectations for consultation in research priority setting by involving VHO's and decision makers.
• consultation workshops were held across Canada: one national workshop, five regional workshops in the south, and three northern regional workshops in each of the territories. Overall, 1,230 individuals were invited and 202 people attended the workshops. Of these, 107 participants were decision makers (including senior hospital and health region managers, clinical leaders, and national and provincial government policy analysts and advisors); 40 were researchers (mid-career and senior academics and researchers in decision-maker settings); and 55 came from a variety of other settings (such as consultants, knowledge brokers, research administrators, healthcare associations, and professional associations).

Reducing Health Disparities and promoting equity for Vulnerable Populations Strategic Initiative

• Extensive consultation with voluntary health charities and NGO's (ie: HSFC, Alzheimer's Society, CBCRA, Lung Association, Tobacco Control) to develop RFA's
• included conference presentations and networking events to reach out to smaller groups

Participation as CIHR representative on stakeholder working groups

• participating as a rep allows the staff to build a network and relationships with the HIV-AIDS community
• staff also learns about the priorities of the community and other organizations (find out priorities of each side)
• some groups are NGO-led; others are gov't-led
• education + consultation: two way exchange

III & JDRF Search for a Cure for Type 1 Diabetes

• partnerships supporting the New Emerging Teams; III also partnered with JDRF in support of a Stem Cells and Diabetes Workshop in March 2002, convened to bring together diabetes and stem cell researchers for discussions on applying stem cell technologies to the treatment and management of diabetes

To provide the public with balanced and objective information to assist them in understanding the problems, alternatives, and/or solutions.

To give knowledge of something, to tell, and/or to acquaint the public with a fact.

To provide the public with balanced and objective information, but in a more engaging, dynamic, and/or interactive style than in Level 1.

More input / feedback from the public is incorporated than in Level 1 activities, but involves less input / feedback than Level 2 activities.

To obtain public feedback on analysis, alternatives, and/or decisions.

To seek an opinion from, ask the advice of, or turn to the public for information.

To present the public with a solution, a draft, or an alternative and specifically ask for their reaction and/or comment.

Advisory Committees and Boards

• Selected members participate in ongoing discussions and/or decisions for a defined purpose

• Good when information or technical expertise are essential to decision making processes

• Can be taken over by vocal minority;
• Advisors may want to become decision makers

Citizen Juries

• Citizens' juries use a representative sample of voters from different constituencies. The participants are briefed in detail on a particular issue and asked to discuss possible solutions

• allows participants to take a wider and more objective perspective, seeing issues from others' points of view

• Resource intensive

Conferences/Colloquiums

• A large-scale meeting taking place over one or more days with a key issue or theme to be discussed through sub-topics

• provide a useful forum to showcase programs, challenges and issues of the day (similar to workshops);
• allows public to interact in a neutral setting with experts and opinion leaders

• Some people are reluctant to speak in an open forum

Electronic democracy

• Includes a variety of different Internet-based tools, including Web sites, E-mail lists, on-line chat rooms, web forums, etc.

• A comparatively fast, inexpensive and logistically simple method to request and obtain information

• Computers are still not accessible by all participants;
• Concerns over the confidentiality, security;
• Individuals may express themselves less courteously on-line than in person

Open House

• A planned event that allows stakeholders to meet with staff to review and discuss specific issues

• involves the entire staff of the organization;
• informal discussions are normally more positive

• some people will want to turn it into a public meeting;
• off-track issues are brought up

Open space technology

• participants offer topics and others participate according to interest

• provides structure for giving people opportunity and responsibility to create valuable product or experience;
• includes immediate summary of discussion

• most important issues could get lost in the shuffle;
• can be difficult to get accurate reporting of results

Polling

• a process where trained interviewers ask a specific segment of the population a list of pre-tested questions

• good for discovering perceptions;
• can be cost-effective for reaching populations in wide-spread areas;
• all respondents get equal weight

• results can be skewed unless tracking mechanisms are firmly in place;
• obtaining results can be time consumer;
• participation rate can be highly dependent on interest in the subject

Public Dialogue

• a structured process that allows citizens to discuss policy issues and to struggle with the inherent tensions and trade-offs

• allows for interaction between government and citizens;
• provides in-depth thinking from citizens;
• helps to understand the range and intensity of views expressed on issues;
• may provide more validity than traditional focus group.

• Very expensive;
• requires a facilitator trained in the public dialogue method; preparation of background discussion papers can be resource intensive

Public meeting

• formal meetings with scheduled presentations offered

• provides opportunity for public to speak without rebuttal;
• meets legal requirements;
• puts comments on record

• does not foster dialogue;
• creates us vs. them feeling;
• may dislike public speaking

Task force

• a group of experts or stakeholders formed to develop a specific product or policy recommendation

• findings of a task force of independent or diverse interests will have greater credibility;
• provides constructive opportunity for compromise

• task force may not come to consensus or results may be too general to be meaningful;
• time- and labour-intensive

Workshops

• a combination of a meeting and an advisory group. Workshops attempt to achieve specific results/steps in a plan

• effective when there is a tightly constrained time frame and a need for expert knowledge of a group of experts;
• group work identifies areas of agreement and areas that require further work

• problem needs to be carefully defined and participants well selected for their knowledge, credibility and representation;
• can result in statement that stiffens other's opposition