Our commitment to citizen involvement
Why citizen engagement matters to CFN
We are certain that our commitment to citizen engagement throughout the work we do and fund, will result in more relevant research, improvement in the design of the research to address ethical and social concerns, improvement in the dissemination of our research findings and therefore, will increase the likelihood that it will make a difference in policy and practice to improve the lives of older Canadians living with frailty.
Older Canadians living with frailty are an increasingly large segment of the population. Though they are significant consumers of healthcare resources, their input is underrepresented in research, the health care system and in setting health care policy. Canada’s health care system has advanced to meet the needs of those with acute and reversible illnesses; however, the system is ill-equipped to meet the specific, and often chronic, needs of older adults living with frailty. To ensure that their needs are met as the Canadian health care system evolves, it is important that older Canadians living with frailty have a voice in the research conducted to inform their care, the administration of the healthcare system, the way they interact as consumers of healthcare, and in the setting of healthcare policy.
Who is a “citizen”
- older Canadians living with frailty, or,
- current or former family or friend caregivers of an older adult living with frailty, or,
- others from the general public interested in the care of older adults living with frailty. “General public” refers to citizens with lived or personal experience with the issues relevant to CFN’s mandate who are preferably not affiliated with public or private healthcare providers, government, or industry in the area of care of older adults living with frailty.
How CFN engages citizens
1. Ensuring patients and family/friend caregivers are represented
- In 2014, the CFN Board of Directors struck a working group to look at citizen engagement within the Network. This group developed a policy which was adopted by the Board in December 2014, and the group transitioned to a formal advisory committee reporting to the Scientific Director and CEO, the Citizen Engagement Committee.
- It is important that older Canadians living with frailty have a voice in the research conducted to inform their care. All CFN funded projects must demonstrate that knowledge users (e.g. patients/families, decision makers, stakeholders, practitioners) participate in the study in a meaningful and tightly integrated manner.
2. Giving Voice to Older Canadians Living with Frailty
- At its 2015 National Conference, CFN hosted a world-café style participatory meeting of 60 citizens, citizen advocacy representatives, researchers, healthcare professionals, policy makers and industry partners. Participants explored and voted on a range of topics and strategies for engaging older Canadians living with frailty and their caregivers in research, healthcare decision making and policy setting. For proceedings and more details on the world café, please click here. A discussion paper produced from the meeting was published in Research Involvement and Engagement, Giving voice to frail elderly Canadians: Engaging frail elderly Canadians in research, healthcare settings (2016 2:23//DOI: 10.1186/s40900-016-0038-7).
- Canadian Frailty Network established a group, the Canadian Frailty Priority Setting Partnership, to undertake a study aimed at identifying priority areas for Canadian researchers, knowledge users and and funding organizations. To do this, the Canadian Frailty Priority Setting Partnership followed the methods of the James Lind Alliance. It asked Canadians affected by frailty – either personally, as a family member or caregiver, or through their work – for their unanswered questions about living with frailty, and care, support and treatment for older adults living with frailty. Click here to read more about the process and the Top 10 Priorities identified by citizens.
- In 2018 a grant competition was launched designed to fund innovative research, knowledge translation or quality improvement proposals that directly addressed one or more of the Top 10 citizen identified frailty priorities during the CFN-funded Canadian Frailty Priority Setting Partnership study. Click here to see the funded projects
3. Education and training for researchers and knowledge users
- CFN also has work underway in education and training. A module dedicated to educating researchers about the importance of Citizen Engagement is embedded within its unique Interdisciplinary Training Program and is a requirement for all program participants. The Citizen Engagement Committee was involved in the review and improvement of the module. Click here to read more.
- The Citizen Engagement Committee (CEC) created a set of guidelines to help communicate CFN research to a broader, general audience. The guidelines include some general rules and tips for writing a “lay” summary, as well as links to readability tools, and a “before and after” example. Check out the guidelines now.