In Canada, more than 660,000 people are estimated to be living with heart failure,1 with one in two people being affected, either as a person with the syndrome or a loved one.2 3 Being diagnosed with heart failure is a life-changing event, which can lead to feelings of fear and anxiety about the future.4 Lives can be ‘flipped upside down’,1 with people experiencing depression, sleep disturbances, shortness of breath and pain.2 5
Heart failure also places a considerable burden on Canada’s health system and economy. By 2030, it will cause an estimated 54,000 hospital admissions per year, generating an annual cost of CAD $722 million.6
Much can be done to guide and empower people affected by heart failure, but access to support and best-practice care varies considerably across Canada.1 To date, federal and provincial authorities have offered little to no guidance on the syndrome, creating gaps in clinical practice.
In 2020, the HeartLife Foundation launched the Canadian Heart Failure Patient & Caregiver Charter to encourage the development and delivery of a national standard of best-practice care, and to boost support for people affected by heart failure.
The charter sets out the rights and responsibilities of people living with the syndrome and their carers, empowering both groups.1 In addition, the tool seeks to inform policymakers, healthcare providers and insurance companies about best-practice care.1 It can be used to identify and address gaps in local care, and support efforts to improve care nationwide.
As a patient-led organisation, the HeartLife Foundation committed itself to developing a person-centred document.7 To achieve this goal, the charity consulted its members through a series of online and in-person workshops to identify strategic priorities for improving heart failure care. This led to the creation of 40 priorities,7 which were narrowed down to the following rights outlined in the charter:1
A list of responsibilities that help people to self-care effectively are outlined in the document,1 including self-monitoring symptoms, seeking medical help when needed and taking medications as prescribed.
The charter is an example of how patient-led initiatives can drive improvements in health policy. Experts involved in developing the tool have reported that some health administrators use it to review care policies.7 For example, they may use it to advocate for more mental health support in heart failure services or to review the composition of their multidisciplinary care teams.
In addition, more common health system interactions now take the perspectives of people affected by the syndrome into account. Printed copies of the charter, for example, have been distributed to general practitioners across Canada to guide consultations.7 The HeartLife Foundation’s partners from the life sciences industry are also using it to encourage employees to consider lived experiences of heart failure when communicating with healthcare professionals.7
The HeartLife Foundation’s ultimate goal is for the charter to be incorporated into decision-making at the national, regional and local levels, and for hospitals to give the document to people who have been diagnosed with heart failure.7
The charter has informed international advocacy initiatives focused on cardiovascular disease and health, including the World Heart Federation’s Roadmap for heart failure.7 The Global Heart Hub is also adapting the tool so it can be applicable to an international audience.
The HeartLife Foundation is contributing to several large-scale research initiatives, including working with the Canadian Institute of Health Economics to produce a report that identifies gaps in policy and care, highlights best-practice examples and offers recommendations for improvement.7 Alongside other organisations, the foundation has applied for a grant from the Heart and Stroke Foundation of Canada and the Canadian Institutes of Health Research to set up a national heart failure research network.8
Marc Bains (Co-Founder and Vice-President, HeartLife Foundation): firstname.lastname@example.org