H19 ‘ask the doctor’ of the european huntington association (EHA) – a pilot project on online patients advisory service

Abstract

Background Huntington disease (HD) is an incurable and devastating neurogenerative disease. Patients, family members and caregivers are often in need of information on HD. Although nowadays, the access to various information about HD via literature and virtual media, mostly internet, seems to be unlimited, it is important to consider that single information without basic content may be misunderstood or interpreted in an improper way. Persons in geographically isolated or less developed areas – away from centers of expertise or due to personal limitations to visit the center of expertise (no ability to drive, limited infrastructure, isolation, no social integration) may experience problems to reach professionals to obtain proper information. Methods Therefore, the European Huntington Association (EHA) launched in December 2016 a pilot project on the patient online service ‘Ask The Doctor’ that provides accurate information about HD to individual persons at the level and in the language of the user in a very confidential way. Within the project, so far 65 requests were received via an online form. Most users provide information on the country of origin, stating 15 different countries. The service communicates mostly in English, upon request of the user communication is as well done in different languages. Results The service provides needs based solutions under consideration of the individual’s resources and tries to obtain long term solutions for individuals by providing contacts in the country of origin, if required. It works with local patient’s associations, being fully an advisory service without providing any online therapy. The service ‘Ask The Doctor’ presents the results annually at the board meeting of the EHA. The EHA plans to introduce a survey obtaining information on the satisfaction level of users. Conclusion There is a significant need for such kind of service, in particular in even more languages than now.