Engaging patients and the public meaningfully is fundamental to ensuring that research and digital health solutions are relevant, accessible and usable in everyday life.

This was the central message of the webinar “From heart to mind: how public and patient involvement supports research to prevent cognitive impairment in cardiovascular disease”, organised by the Association of Cardiovascular Nursing & Allied Professions (ACNAP) in collaboration with DORIAN GRAY.

The session explored  how meaningful patient and public involvement can improve the relevance, accessibility and real-world impact of research, particularly in projects addressing the complex relationship between cardiovascular disease and cognitive impairment.

Speakers underlined that public and patient involvement goes beyond inviting people to complete questionnaires or take part in interviews. It involves working alongside individuals as advisors, collaborators and partners - bringing their lived experience to shape how research is designed, implemented and communicated.

Speaker highlights

Professor Tiny Jaarsma and Dr Leonie Klompstra (Linkoping University) opened the discussion by distinguishing patient participation from patient involvement. They stressed that meaningful involvement goes beyond completing questionnaires or attending study visits: it means drawing on patients lived experience to improve how research is planned, delivered and shared. They highlighted co-design as a valuable approach for making patients equal partners in the research process.

Dr Cindy Birck (Alzheimer Europe) introduced the wider principles of Patient and Public Involvement, describing it as an active and democratic process rather than simply research participation or consultation. She underlined how involving members of the public can make research more relevant, accessible and responsive to real needs.

From a technical perspective, Professor Nicola Lopomo (Politecnico di Milano) presented the co-design process behind DORIAN GRAY’s exergame platform, showing how input from end-users, carers, domain experts and technical experts is helping to shape the Avatar-Based Coaching Exergame through activities such as focus groups, workshops, questionnaires and interviews.

Professor Leonardo Angelini (Haute École spécialisée de Suisse occidentale) focused on the co-design of the MIRROR app, one of DORIAN GRAY’s digital tools. He discussed the challenge of supporting older adults over time without making technology feel burdensome, highlighting the importance of motivation, simplicity and a seamless experience across devices.

Adding a crucial human perspective, Mrs Annick Germeys (member of the European Dementia Carers Working Group) shared the perspective of a caregiver and expert by experience. Her contribution emphasised that public involvement brings real-life knowledge into research, helping researchers better understand daily challenges and develop more human-centred solutions.

Key takeaway

Throughout the webinar, speakers returned to a shared message: involving patients and members of the public takes time, structure and balance, but it is essential for developing research and technologies that respond to real needs. As one of the key conclusions stated, co-design turns patients into equal partners, not participants.

By embedding public and patient involvement into its research activities, DORIAN GRAY aims to ensure that its scientific and technological innovations are not only advanced, but also meaningful, accessible and useful for the people they are designed to support.

Watch the webinar

If you missed the webinar,  the full recording is available on the ESC platform. Please note that access to the recording may be restricted. You can create an ESC account free of charge to access available content.