January 3, 2019

MyDystonia Ambassador Meeting – Dublin 2018

MyDystonia is an application created by Dystonia Europe for people with dystonia to monitor their health condition and daily routines. This electronic diary documents symptoms and disease impact according to medication. This tool can be used by patients for their own records and to improve communication with the doctor during medical appointments to get better treatment outcomes.

The application was launched in 2015. To achieve the goal of improving the quality of treatment, it is necessary to inform patients and specialists about the application and promotion. We’re constantly working to improve the platform to make it as useful as possible. We create surveys and updates based on the opinion of users. 

We also have the MyDystonia Ambassador program. An Ambassador is a person who works voluntarily with users of the application at the national level. Today, we cooperate with ambassadors from 9 European countries – Germany, Norway, Spain, Sweden, UK, Denmark, Poland, Finland and France. Since 2016, we have organized annual meetings of ambassadors to hear about problems and successes in their countries. The first inaugural meeting of ambassadors took place in Frankfurt in 2016. In 2017, the meeting took place in Rome after the D-Days conference.

This year, we met on October 20 in Ireland to work for MyDystonia. The event was attended by ambassadors from 7 countries, the Dystonia Europe board, our IT specialist and president of Dystonia Ireland – Maria Hickey. 

Participants were welcomed by Merete Avery – DE president and Monika Benson – DE executive director. Monika presented updated information about the work of Dystonia Europe. Then our IT advisor Eelco Uytterhoeven, who is responsible for technical issues, talked about what has changed in the application since the last meeting. Adam Kalinowski – member of the DE board, who is responsible for coordinating the ambassadors, showed the results of the survey for app users. “MyDystonia Usage Activity Survey” was carried out in 2017 and was attended by over 150 users of the application. From the results we found out what users want to change in the application and what works well. The ambassadors had the opportunity to express their feelings about the results of the survey and compare results with their work experience. After this discussion, Eelco presented the next generation of the app, MyDystonia 2.0.
The second part of the meeting started with group work and the participants together answered the following questions:

  • What features would you like to see in MyDystonia 2.0?
  • What is your opinion about the current design of MyDystonia?
  • Do you have suggestions on how to reach new users?
  • What is the most difficult aspect of being an ambassador?

The meeting ended with a summary of the report on the work of all groups. In the evening, we met with participants to visit the capital of Ireland, have dinner together, get to know each other better and talk not only about work.

Thank you to all the participants of the meeting for the valuable contribution they make in the development of the project. Thanks to such meetings, we have a better picture of what needs to be done to make the MyDystonia application as useful as possible to improve the quality of life of people with dystonia.

We are also looking for new MyDystonia ambassadors from other countries, such as Spain, France, Ireland, Italy, Russia and more. If you would  like to cooperate with us, please contact us at poland@mydystonia.com.

MyDystonia is available in many languages and can be used on the website and smartphone. Find out more and register at www.dystonia.com

Adam Kalinowski
MyDystonia Coordinator
Board Member Dystonia Europe