Partner meeting in Tallinn on 4–5 December 2025
Experts from all partner organisations gathered in Tallinn to discuss, plan, and coordinate the implementation of the project activities. We were delighted to welcome expert-by-experience Aita Rõemus, who provided valuable insights from the patient perspective. She shared important information on digital health information and peer support services in Estonia, contributing to the discussions and enhancing our understanding of patients’ needs and experiences.
Mapping primary information services in Finland and Estonia
The Finnish Movement Disorders Association collected information through a survey on the primary information received by people diagnosed with Parkinson’s disease or Parkinson plus disease. The results showed that 39% of respondents had not received individual primary information from healthcare professionals, while 53% had not attended a primary information event or information day. A total of 467 people responded to the survey.
In Estonia, primary information is mainly provided by neurologists working in university hospitals and central hospitals.
The primary information received in both countries generally covers topics such as disease symptoms, medication use, treatment options, coping with the disease, and self-management, particularly the importance of physical exercise. These topics appear to be addressed well. However, less information is provided on the importance of rest and nutrition, rehabilitation services, peer support opportunities, social benefits and protection, and maintaining social relationships.
We worked towards achieving the project’s objectives and developed a work plan for the expected project outputs
– How do we ensure the participation of the target group?
– How do we ensure sufficient discussion and engagement with healthcare professionals?
– How do we ensure effective collaboration and knowledge sharing between Finland and Estonia?
We have started gathering primary information materials, planning improvements to the partner associations’ websites, developing materials for peer support, and organising a workshop. These activities aim to pilot and ultimately finalise guidelines for healthcare professionals on digital primary information and peer support.
