Giving voice to frail older Canadians
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 health care system, the way they interact as consumers of health care, and in the setting of health care policy.
Canadian Frailty Network values the meaningful and appropriate involvement of citizens (patients and their family and friend caregivers, as well as the interested general public) in research, policy and program development, from agenda setting and planning to decision making, implementation and review. We believe – and evidence suggests – that when citizens are engaged in decision making, it improves the patient experience, contributes to more cost-effective services and enhances the overall quality of our health and social care systems.
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.
Chaired by Board member Joyce Resin, the mandate of the Citizen Engagement Committee is to assist CFN in ensuring patients and family/friend caregivers, as well as the broader community, are involved in CFN strategic and operations planning, and in improving the patient and caregiver experience in the work CFN undertakes and funds. This includes citizens participating as knowledge users on the CFN Board of Directors, Research Management Committee, and most advisory committees; and in all CFN-funded research, implementation or knowledge translation projects, in a meaningful way, as knowledge users.
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).
Other initiatives underway
CFN also has work underway in education and training, and in research priority setting. Click here to read about these initiatives. Future work planned will address recruitment of citizen and family/friend caregivers to committees and research projects, and tools to facilitate input.
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.