Global Heart Hub’s “Roadmap” Promotes Shared Decision Making in Heart Valve Disease

November 27, 2023—Global Heart Hub, the international alliance of heart patient organizations, recently announced the publication of an implementation guide that provides the information needed for shared decision making in the treatment of patients with heart valve disease. The document, which is intended for patient organizations, health care professionals, and advocates, was released at PCR London Valves 2023 course held November 19-21 in London, United Kingdom.

According to Global Heart Hub, “Paving the Way: A Roadmap to the Successful Implementation of Shared Decision-Making in Heart Valve Disease” was developed after a patient-led, consensus-driven roundtable collating insights from 19 international, multidisciplinary experts. Participants included patients with heart valve disease, cardiac surgeons, cardiologists, researchers, and nurses. It was also developed with The Health Policy Partnership.

The document seeks to deliver a clear path for implementing shared decision-making for people living with heart valve disease. Additionally, the roadmap supports national patient organizations in their work with other key stakeholders, advocates, and decision-makers to accelerate change.

The roadmap document can be downloaded at globalhearthub.org/SDM-Roadmap.

As noted in the Global Heart Hub’s press release, patients who are diagnosed with heart valve disease are often presented with a range of different treatment options, which can make it difficult to make decisions about which treatment to pursue. Currently, shared decision-making is rarely embedded in patient pathways despite being shown to greatly improve quality of life and patient satisfaction. This can lead to people feeling anxious and unsure of their options and sometimes doubting that they have made the right decision.

“Shared decision-making plays a crucial role in improving the quality of life for people with heart valve disease, ensuring they are able to make the best decisions for themselves in line with their preferences and personal life goals,” commented Neil Johnson, Executive Director of Global Heart Hub, in the press release. “We were delighted to host a roundtable—attended by experts from around the world, representing all heart team stakeholders and cochaired by someone living with heart valve disease and a clinical expert—to develop this compelling, consensus-driven roadmap that can facilitate advocacy in different countries and settings.”

Also commenting in the press release, Sandra McGonigle, a patient with heart valve disease, cochaired the international specialists multidisciplinary roundtable and contributed to the roadmap, stated, “Receiving a diagnosis of heart valve disease can feel very scary and overwhelming, especially when people like me have to make such an important decision about which treatment option to go with. When I was first diagnosed, shared decision-making wasn’t embedded in my care. [The roadmap] would have empowered me to be more involved in the care I was receiving and would have alleviated a lot of the worry I felt at the time.”

Sandra Lauck, RN, PhD, a cardiovascular nurse from Canada who also cochaired the roundtable and contributed to the roadmap, added, “Ensuring that shared decision-making is available to every person living with heart valve disease is vital for good health care and improved patient experience. This makes this roadmap a much-needed step in the right direction. We need passionate stakeholders everywhere to come together to improve heart valve care across the globe.”