Background eHealth seems promising in overcoming some important barriers to HD care provision (e.g., availability/accessibility of care, distance to centers). However, research on eHealth in HD is limited and fails to include services specifically designed to fit the expectations of HD gene expansion carriers (HDGECs) and their families. Together with end-users (i.e., HDGECs, their partners and health care providers), we developed a first prototype of the Huntington Support App: a European eHealth platform targeting quality of life of HDGECs and partners at home (HEALTHE-RND HD-eHelp study).
Aim We will provide an update on the development process, including design directions and choices for the prototype.
Methods Dutch end-users were involved in all stages of the user-centered design process (i.e., exploring needs/wishes, developing concepts, detailing of prototype). Their data was checked and complemented with the available data and input from the other participating countries (Czech Republic, Germany, Italy, Ireland).
Outcome Exploration of needs and wishes of Dutch end-users (N=24) yielded several design directions (e.g., increase accessibility of care and support, facilitate navigation through knowledge landscape). Elaborations on these directions with the same end-users resulted in definite design choices for the prototype: a trustworthy safety net where reassuring and reliable information/tools, referrals, and peer/professional support can be found (see Figure 1 for digital mock-up).
Conclusions A first prototype of the Huntington Support App has been developed together with end-users to ensure suitability with their wishes/needs. Evaluation by end-users will assist further development into a fully functional app for implementation in all countries involved.
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