Rethinking cardiovascular care with patients – the PRIC-CVD Study
Despite decades of progress in heart disease research (cardiovascular disease: CVD), it is still difficult to treat people with other health problems at the same time. As individual health situations differ, standard treatment approaches don’t always work well for every patient. Doctors don’t always follow guidelines in the same way, and many patients feel that their personal needs and preferences are not fully considered. As healthcare moves towards more personalised care, it is now essential – not optional – to involve patients as active partners in both research and the design of care.
The iCARE4CVD project, funded by the Innovative Health Initiative (IHI) aims to personalise the diagnosis and treatment of CVDs from early risk to advanced heart failure. A cornerstone of this effort is the PRIC-CVD study (Participative Research for Individualised Care in Cardiovascular Diseases), which introduces a structured, multi-country approach to involve patients directly in co-developing care tools, digital innovations, and adherence strategies.
What is the PRIC-CVD?
PRIC-CVD is a 3.5-year study conducted in Belgium, Germany, Ireland, and the UK. Rather than testing treatments, it focuses on learning from people’s experiences. The study brings together groups of patients in national Patient Panels with different types and stages of heart disease – from those at-risk to those with established heart failure (stages I–IV). Each panel includes 10–12 participants, recruited through university and clinical partners. The researchers ensure that the panels include people of different ages, genders, health conditions, and disease stages. When patients are too ill to take part themselves, close relatives may join the group and speak on their behalf.
The study is designed so that patients are involved throughout the project lifecycle, rather than being consulted once. Their thoughts and feedback are collected in different ways over time: through surveys, interviews, group discussions, and usability testing sessions.
How are patients involved?
The primary objective of PRIC-CVD is to identify patients’ preferences, experiences, requirements, and needs for better diagnosis, treatment and self-care of CVD. Participants are specifically engaged in four main task areas of research:
- Identification of PROMs and PREMs: Patients will help select and prioritise outcome and experience measures that are relevant and meaningful for their disease stage and context. Their input ensures that evaluation metrics used in care and research are truly patient-centred.
- Development of a novel motivational model (for treatment adherence): Patients will shape a novel motivational framework for improving treatment adherence, particularly in the context of digital-supported care. This includes reviewing health decision-making preferences, feedback on behavioural prompts, and validation through a Delphi process.
- Development of a patient journey for individual patients: Patient Panels will contribute to the design of new digitally supported care pathway models developed within iCARE4CVD, ensuring the final definitions reflect real patient needs, experiences, and expectations.
- Usability testing of digital tools: Patients will evaluate the functionality, accessibility, and user experience of digital health tools developed within the project, offering crucial insights into real-world applicability and inclusivity – particularly for older or digitally less-experienced populations.
Involving other experts: the role of healthcare professionals
Healthcare professionals also play a role in PRIC-CVD. Cardiologists, general practitioners, and heart failure nurses take part in parallel group discussions and Delphi studies to assess and refine the motivational model and validate the clinical relevance of selected PROMs/PREMs. Bringing together patient and professional perspectives, the project helps make sure that everyone’s priorities are considered. This makes the results more useful and acceptable to both groups.
What are future opportunities?
PRIC-CVD offers a forward-looking approach of participatory research and lays a strong foundation for developing patient-centred strategies in the care of heart disease. By actively involving patients in designing personalised approaches, PRIC-CVD helps to bridge the gap between clinical evidence and everyday care.
Importantly, the study provides a structured approach for integrating patient perspectives into the development of motivational frameworks and outcome measures—areas traditionally shaped by clinicians or technical experts alone.
For researchers and healthcare professionals, PRIC-CVD shows that co-creating care models with patients is not only possible but essential. As heart disease care continues to become more personalised, this study provides a practical path for embedding the patient voice into both research and clinical practice.
