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Canadian heart failure charter: a person-centred approach to advocacy


The HeartLife Foundation's Canadian Heart Failure Patient & Caregiver Charter outlines the rights and responsibilities of people living with heart failure and their carers. This tool aims to drive a new national standard of care for the syndrome, and to identify and address gaps in local care. Some health administrators have already reportedly used it to guide policies on care for heart failure. The charter has also been shared with healthcare professionals to guide consultations.

The challenge

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.

The solution

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

  • Receipt of an accurate and timely diagnosis of heart failure.
  • Availability of services and resources to support mental health throughout the heart failure care journey.
  • Access to educational tools and resources, including an advance care plan, to empower people living with heart failure to effectively self-manage their health.
  • Empathy and compassion from healthcare providers.
  • Access to a multidisciplinary team throughout the care journey, including specialist cardiologists, nurses, pharmacists, mental health professionals, dietitians, cardiac rehabilitation specialists and general practitioners.
  • Timely access to the best standards of care and current medical therapies.
  • For people living with heart failure to have the opportunity to provide input into decisions regarding future research on the syndrome.

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.

What has been achieved?

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

Next steps

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

Policy tips for heart failure advocates

  • Engage people affected by heart failure in formulating advocacy priorities and policy narratives: working with these stakeholders is essential for understanding the true impact of the syndrome. Patient- and carer-led initiatives help to incorporate lived experiences into decision-making, supporting the delivery of person-centred care and improving outcomes and quality of life.
  • Advocate for best-practice care as a universal patient right: encourage improvement efforts by promoting equitable access to best-practice care as a rule, not an exception. While this approach may encounter resistance, referring to the evidence in clinical guidelines can help to reinforce that integrated and multidisciplinary care should be accessible to anyone living with heart failure.
  • Support mass advocacy by making resources adaptable to the priorities and needs of your community: tailoring efforts to the local environment can strengthen your case for change and outreach to decision-makers. Connect with organisations like the HeartLife Foundation for guidance and support. In addition, use existing charters to help prevent duplication of work and drive unified messaging across the advocacy community.
  • Build a network of allies to bring your charter to the attention of decision-makers: healthcare professionals and life science industry representatives often have extensive networks spanning the clinical and decision-making communities. Engaging these stakeholders can amplify your efforts to reach decision-makers and increase charter uptake.

Further information

  • The Patient Journey Map, from the HeartLife Foundation, summarises the experiences and interactions that people living with heart failure have throughout their care journey.
  • The HeartLife Academy is a free online learning hub.
  • My HeartLife App is a free smartphone application that provides access to an online community, educational resources and tools to support self-care (available in Canada via the Apple and Google Play stores).


Marc Bains (Co-Founder and Vice-President, HeartLife Foundation):

  1. HeartLife Foundation. 2020. Canadian Heart Failure Patient & Caregiver Charter. Canada: HeartLife
  2. Virani SA, Bains M, Code J, et al. 2017. The need for Heart Failure advocacy in Canada. Canadian Journal of Cardiology 33: 1450-53
  3. International Alliance of Carer Organisations. 2017. Carers of persons with heart failure, a four nation study. Washinton: IAOC
  4. Zambrowski CH, Moser DK, Bhat G, et al. 2005. Impact of symptom prevalence and symptom burden on quality of life in patients with heart failure. European Journal of Cardiovascular Nursing 4: 198-206
  5. Heo S, Lennie TA, Okoli C, et al. 2009. Quality of life in patients with heart failure: ask the patients. Heart & lung : the journal of critical care 38(2): 100-08
  6. Tran DT, Ohinmaa A, Thanh NX, et al. 2017. The current and future financial burden of hospital admissions for heart failure in Canada: a cost analysis. CMAJ Open 4(3): E355-61
  7. Bains M. 2021. Interview with Marissa Mes and Faith Everett at The Health Policy Partnership [teleconference]. 27/10/2021
  8. Canadian Institutes for Health Research. Pre-announcement: Heart Failure Research Network Funding Opportunity. Available from: [Accessed 08/11/21]
The Heart Failure Policy Network is an independent, multidisciplinary platform made possible with financial support from AstraZeneca and Roche Diagnostics. The content produced by the Network is not biased toward any specific treatment or therapy. All outputs are guided and endorsed by the Network’s members. All members provide their time for free. The Network is hosted by The Health Policy Partnership .