ENGAGE

The challenge

Digital health technologies often fail to reflect what matters most to patients, limiting engagement, adherence and real-world impact. Many digital tools are designed from clinical or technical perspectives, focusing on metrics that satisfy healthcare providers or researchers rather than addressing the concerns and priorities of people living with chronic conditions. This disconnect leads to poor adoption, discontinued use and ultimately limited health benefits. Patients may find that the data collected do not answer their questions about managing their condition, or that the burden of data collection outweighs the perceived value.

There is a clear need for digital biomarkers that are grounded in patient priorities and support meaningful self-management in chronic disease. Stakeholders include patients living with chronic conditions, healthcare providers seeking to support patient empowerment, technology developers aiming to create impactful solutions, and researchers working to demonstrate real-world effectiveness.

The project: ENGAGE

ENGAGE focuses on co-creating digital biomarkers together with patients, combining sensor data with patient-reported outcomes and contextual information. The project represents a fundamental shift in how digital health technologies are developed, placing patients at the centre of the design process from the outset rather than consulting them only after solutions have been created.

TNO coordinates the project and contributes methodological expertise in digital measure development, patient engagement and data analysis, ensuring that patient perspectives are embedded throughout the design and evaluation process. This involves facilitating structured co-creation sessions where patients identify their information needs, priorities for self-management and barriers to technology adoption. The insights gathered shape which digital measures are developed, how data are presented to users and what functionalities are most valuable in supporting daily disease management. Sensor-derived data are combined with patient-reported outcomes and contextual information about daily life, creating a comprehensive picture that reflects both objective physiological changes and the subjective experience of living with chronic disease.

The project demonstrates how patient-driven approaches can lead to digital measures that are more relevant, acceptable and usable in daily life, supporting improved insight into disease management and patient experience. By involving patients as active collaborators rather than passive subjects, ENGAGE ensures that the resulting digital biomarkers address real-world needs and integrate seamlessly into patients' lives. This approach increases the likelihood that technologies will be adopted and sustained beyond research settings.

Looking to the future

The patient co-creation methods developed in ENGAGE provide a blueprint for future digital health development, demonstrating that meaningful patient involvement improves both the quality and impact of digital biomarkers. Future applications will extend these approaches to additional chronic conditions and diverse patient populations, ensuring that digital health solutions serve all who could benefit.

Healthcare systems increasingly recognise the value of patient-centred care, and the evidence generated through ENGAGE will support the integration of patient-driven digital biomarkers into routine chronic disease management. Collaboration between patient organisations, healthcare providers, technology developers and researchers will be essential to scale these approaches and realise their full potential in improving quality of life and health outcomes for people living with chronic conditions.