What is the reason for and aim of the publication?
Cardiovascular disease (CVD) continues to represent a major global health challenge. It remains the leading cause of death globally and contributes substantially to the burden of disease among the estimated 253 million individuals living with CVD. In addition to mortality, the number of years lived with disability associated with CVD has increased markedly, doubling from 17.7 million since 1990 to 34.4 million in recent estimates.
Patient and public involvement (PPI) is the active engagement of individuals directly affected by CVD in the development and implementation of CVD healthcare services, research activities and associated policy, and is increasingly recognized as an essential component of modern healthcare. Such involvement can contribute to more personalised and patient-centred care, help address health inequalities, and potentially reduce the overall burden of CVD.
The objective of this paper is to outline the concept of PPI and to highlight the role of PPI across multiple contexts, including clinical practice, scientific research, regulatory processes, and the development of healthcare policy and clinical guidelines.
What are the most important take-home messages?
- ‘Nothing for us, without us’ reinforces the principle that people with lived experience should be meaningfully engaged in shaping approaches that influence their health and wellbeing. This principle is therefore pivotal for the effective prevention and management of patients with CVD.
- Partnerships with patients and the public form a cornerstone of personalised care and may ultimately contribute to reducing the global burden of CVD.
- Nurses and allied health professionals play key roles in advancing PPI. This statement describes the concept of PPI and its application across multiple contexts, including clinical practice, scientific research, regulatory processes, and the development of healthcare policy and clinical guidelines.
- The Association of Cardiovascular Nurses and Allied Professions (ACNAP) in collaboration with the European Society of Cardiology (ESC) Patient Forum defines PPI in cardiovascular care as: ‘PPI in cardiovascular care refers to the active and meaningful ways in which patients, carers, and members of the public equitably contribute their lived experience and articulate their priorities to shape the development, organization, delivery, implementation, and evaluation of services for the prevention and treatment of CVD across clinical care, research, regulation, and policy. Patient and public involvement should be equitable, inclusive, transparent, and a core activity of all aspects of cardiovascular care.’
Central Illustration. Patient and public involvement (PPI) in the management and prevention of cardiovascular disease. Core considerations across all cardiovascular disease areas of work, role of PPI across different areas and perspectives.
What are challenges in practical implementation – and possible solutions?
Despite growing recognition of the value of PPI, several challenges remain in its practical implementation across cardiovascular care, research, and policy. Limited awareness and experience among healthcare professionals may hinder meaningful engagement, and involvement risks becoming tokenistic without adequate training and guidance. In addition, effective PPI requires sufficient time, resources, and institutional support, which are not always available. Barriers to participation may also arise from patients’ health status, health literacy, or lack of confidence, and individuals from disadvantaged or minority groups often remain underrepresented.
Addressing these challenges requires targeted training for professionals and patient partners, dedicated resources and infrastructure for PPI activities, and strategies to promote inclusive participation. Embedding PPI within organizational policies, research frameworks, and guideline development may further support its sustainable integration into cardiovascular care.
What further developments on the topic are emerging?
The ESC has already developed an ESC Patient Forum which comprises ~40 patient advocates from European countries. The Patient Forum aims to integrate the patient perspective into clinical practice guidelines, research and education, to bridge the gap between clinical expertise and lived experience, ensuring patient voices influence ESC activities and policy-making.
Patient and public involvement in the management and prevention of cardiovascular disease
Hendriks JM, McGreavy P, Fredericks S, et al. 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. Eur J Cardiovasc Nurs. Published online January 5, 2026. https://doi.org/10.1093/eurjcn/zvaf191
Document types published by the ESC, Associations, Councils, Working Groups, and ESC Committees (according to the ESC Scientific Documents Policy):
