Movement disorders are serious, progressive neurological diseases that have a significant impact on quality of life. In Finland, over 70,000 people are affected, and in Estonia more than 20,000. There is a pressing need to modernise how patients and their families receive primary, evidence‑based information on symptoms, disease progression, and self‑management strategies.
As the population ages, the risk of Parkinson’s disease and Parkinson’s Plus is expected to increase in the future. Primary guidance and information about movement disorders do not currently reach all individuals living with these conditions or their loved ones. In addition, the digital opportunities available for providing this primary information are not being utilised to their full potential.
Peer support is important for people with Parkinson’s disease and Parkinson’s Plus, as it can reduce loneliness, increase hope, and strengthen treatment adherence. Although peer support has increasingly moved to online platforms and mobile applications, these digital opportunities are still only partly utilised.
The project DiMod will result in:
The project aims to digitalise primary information on movement disorders, develop a model for digital peer support, and create recommendations for healthcare professionals to direct individuals to reliable sources of information and support. These activities are jointly implemented in Finland and Estonia. The project highlights the role of patients and thus co-creation of new solutions.
The expected impact:
– improved availability of reliable primary information that is accessible anytime, anywhere, and open to everyone
– enhanced digital peer support through the Toivo application
– enhanced guidance to initial information and peer‑support services.
Project in brief
The project consists of three thematic areas.
Improving the primary information services for movement disorder patients
Enhancing the accessibility of primary information services through digitalisation. This will be achieved by employing co-development methods in collaboration with representatives from the target groups from both countries.
The existing informational materials produced by the national movement disorders associations will be digitalised, updated with the latest research evidence, and made available through a single, user-friendly website.
Development of operating model for digital peer support
The project co-creates a modern, patient-centred peer support model together with people living with movement disorders. The model includes the development of guidelines, processes, training activities, patient-focused podcasts, and the use of digital tools such as the Toivo mobile application.
The new approach to peer support will be tested in Finland through the existing Toivo application and piloted in Estonia. Participant feedback will be collected throughout the project to further improve the model.
Recommendations for healthcare professionals on directing patients
Creating recommendations for healthcare
professionals about directing patients with a movement disorder diagnosis.
The work starts with consultative discussions with healthcare professionals and experienced specialists, patients
themselves, and the guidelines and information materials are then created based on this feedback.
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