Overview

The Global Heart Hub (GHH) engaged HPP to work with a European multidisciplinary steering committee to develop a comprehensive patient pathway for heart valve disease. We adapted this to Canada and Germany, working closely with national experts, and supported GHH to leverage these resources for advocacy and policy action.

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The Canadian heart valve patient journey report has been an incredible resource for us as a nascent patient organisation. We have used it extensively, and it has opened doors to conversations with policymakers and helped raise awareness about the lived experience of people with heart valve disease to so many more.

Ellen Ross, Managing Director, Heart Valve Voice Canada

The challenge

Heart valve disease affects millions of people and its prevalence is growing. If detected and treated in a timely manner, people can recover and enjoy good quality of life. However, significant gaps remain throughout the care pathway.

The Global Heart Hub established a Heart Valve Disease Patient Council to bring a patient advocacy focus to heart valve disease. They commissioned HPP to develop a care pathway report that illustrated the needs of patients at all stages of care, to convey to policymakers the need to elevate standards of care and achieve optimal outcomes. They also wanted to empower their patient community to engage in shared decision-making, as this was seen as a clear gap in achieving optimal care.

What we achieved

The European care pathway report was seen as an invaluable tool by GHH members and our steering committee, and was widely disseminated through multiple channels, including a policy workshop in Brussels and a patient advocacy conference in Stockholm.
We translated the report’s findings into an article, co-authored by the steering committee members, that was published in the European Heart Journal.
The care pathway has served as an important basis for advocacy for the Heart Valve Patient Council and its members in Europe, Australia, Japan, Brazil and Mexico.
The Canadian care pathway was shared with policymakers at the Ontario Provincial Parliament, and led to a bill (Bill 66) that enacted the Heart Valve Disease Awareness Act, which proclaimed 22 February as HVD Awareness Day and a week in September as HVD Awareness Week.
The German report recommendation to create comprehensive heart health checks was subsequently included in the draft of the national ‘heart law’.