Nothing for us, without us: Why patients must help shape cardiovascular care
Cardiovascular disease (CVD) is the world’s leading cause of death, responsible for nearly one in three deaths globally and close to 20 million deaths in 2024 alone. While advances in treatment and prevention have saved many lives, the burden of heart disease is not shared equally. People in low- and middle-income countries and historically excluded communities continue to face higher risks and poorer outcomes.
Against this backdrop, a new international statement from the European Society of Cardiology (ESC) calls for a shift in how cardiovascular care is designed and delivered. The ESC brings together clinicians, researchers and patients to advance cardiovascular research, education and care worldwide.
Developed in collaboration with patients, clinicians and researchers – including Suzanne Fredericks, a nursing professor at Toronto Metropolitan University (TMU) – the statement is grounded in the idea of “Nothing for us, without us.” It argues that lasting improvements in heart health depend on a simple but powerful principle: patients must be partners, not afterthoughts, in shaping care, research and policy.
Addressing gaps in care
Professor Fredericks is a member of the ESC’s International Science and Education Committees. “As part of the ESC, we set global research and education priorities for heart health,” she said. “But those priorities are shaped not only by evidence, but by what patients and allied professionals tell us about gaps in care.”
Despite broad agreement that patient perspectives matter, professor Fredericks noted that involvement in cardiovascular research and health-care design is often limited. Patients are frequently consulted only after key decisions have already been made. True engagement, she argued, must begin earlier, when research questions are formed, services are designed and policies are developed.
She also pointed to growing concern about “research waste,” referring to studies that consume time and resources but fail to improve care. “Research waste happens when projects aren’t meaningful to patients or don’t lead to real changes in care or policy,” she said. “Working with patients from the beginning helps prevent that.”
Meaningful involvement can also improve care at the individual level. Fredericks shared that while heart surgery patients often receive clear guidance on physical recovery, patient conversations revealed gaps in long-term mental health support.
“One patient told me she could manage the basics after surgery, but the emotional impact over time was where support was missing,” she said. That insight sparked a new research initiative for professor Fredericks, focused on mental health after cardiac surgery.
What patient and public involvement looks like
The ESC statement aims to establish a shared, global understanding of patient and public involvement in cardiovascular care. It was developed with direct involvement from patient partners through the ESC Patient Forum. This patient-led group represents people with a wide range of cardiovascular conditions who serve alongside clinicians and scientists on ESC committees, contributing as equal partners.
Rather than treating involvement as a one-time activity, such as completing a survey, the statement calls for patients to be embedded throughout the entire process – from generating ideas to sharing results.
“This isn’t about asking patients what they think at the end,” professor Fredericks emphasized. “It’s about working with them at every stage of the research process.”
Global impact where it’s needed most
The need for patient involvement is especially urgent given global inequalities in heart disease. More than 75 per cent of cardiovascular deaths occur in low- and middle-income countries, where people often develop heart disease at younger ages and face higher rates of premature death.
By involving patients and communities from diverse settings, Fredericks and her colleagues hope to design solutions that reflect local realities. “Heart surgery in a low-income country is very different from Canada or Europe,” she noted. “We need voices from everywhere.”
Professor Fredericks hopes the statement’s framework will support more personalized care, reduce health inequities and strengthen trust between patients and health systems by ensuring decisions are shaped by the people they affect most.
To learn more, read “Patient and public involvement in the management and prevention of cardiovascular disease: a statement of the Association of Cardiovascular Nursing and Allied Professions of the ESC and the ESC Patient Forum (external link, opens in new window) ” in the European Journal of Cardiovascular Nursing.