Making patient experience count: Finland’s JACARDI pilot brings patient voices into diabetes care

Led by the University of Eastern Finland (UEF), this pilot is led by Professor Tomi Mäki-Opas, together with study coordinators Sonja Julkunen and Katja Soininen, and focuses on the digital collection of Patient Reported Outcome Measures (PROMs) in diabetes care.

How do people with diabetes actually feel in their everyday lives, beyond clinical indicators and laboratory results? 

That is the question behind one of JACARDI’s most forward-looking data pilots. Led by the University of Eastern Finland (UEF) within JACARDI’s Work Package on Data, the pilot explores how digital tools can be used to collect PROMs from people living with type 1 and type 2 diabetes receiving specialised care. 

The initiative focuses on the EQ-5D-5L questionnaire, an internationally recognised PROM tool that captures dimensions such as mobility, pain, anxiety and daily functioning. But the ambition goes far beyond digital surveys.

The pilot aims to understand how patient-reported outcomes can support value-based healthcare and help healthcare professionals see a more complete picture of diabetes management. 

“We now have the first real-world experience of integrating digital PROM collection into routine diabetes care,” explains study coordinator Sonja Julkunen.

Turning patient-reported outcomes into everyday care

The digital data collection officially started in February 2026 at the endocrinology outpatient clinic of the Wellbeing Services County of North Savo in Finland. Since then, the project team has already gathered important operational insights and encouraging early participation figures.

During the first 11 weeks, 545 patients were targeted for the baseline questionnaire. Among patients who received digital notifications, nearly half completed the questionnaire, and more than 70% of all responses were collected digitally.

Behind these numbers lies a carefully designed digital pathway. Patients receive text message reminders before their appointments and complete the questionnaire through the OmaSavo Plus platform using strong digital identification. The information is then transferred into a data lake and made accessible to healthcare professionals through a platform connected to electronic health records.

The experience has also highlighted the real-world challenges of digital innovation in healthcare.

Since the questionnaire follows strict digital representation guidelines, the team developed a custom-built form solution when existing systems could not adequately display the questionnaire format. Tight clinical schedules also make it difficult for doctors and nurses to systematically review responses during appointments.

Yet the pilot is already showing added value in patient interaction.

Healthcare professionals reported that the questionnaire can help initiate conversations, particularly with younger adults who may not spontaneously discuss wellbeing or mental health concerns during consultations. In some cases, nurses were able to identify issues in advance and alert physicians before appointments.

The project has also invested heavily in communication and patient engagement. Information campaigns were launched through social media, press releases, posters in clinics and collaboration with diabetes patient organisations — demonstrating that successful digital health innovation depends as much on communication as on technology.

From Finnish implementation to European learning

The pilot arrives at a particularly important moment for Finland’s healthcare system. The Finnish Ministry of Social Affairs and Health has designated the EQ-5D-5L questionnaire as the national generic PROM measure, with diabetes among the first target areas for implementation.

This means that the experience gathered through JACARDI’s pilot informed a broader national expansion of PROM data collection into primary healthcare and specialised diabetes services across Finland.

The pilot team will continue refining the system in the coming months, testing new approaches to improve response rates and strengthen value-based analysis.

Ultimately, digital healthcare transformation is not only about collecting more data, but about making patient experiences visible, actionable and impossible to ignore.

This is exactly where JACARDI’s Work Package on Data comes in: building the foundations for more accurate, comparable and patient-centred data on cardiovascular disease and diabetes across Europe. This pilot from the UEF is one step in that direction, turning patient-reported outcomes into real-world evidence that can help close gaps, highlight inequalities, and support better-informed healthcare decisions.