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J30 Iqare: E-health And E-learning For Patients With Huntington Disease: For Better Care At Home
  1. D Engelhard1,
  2. J de Man1,
  3. M Pieper1,2,
  4. W Achterberg1,2
  1. 1Huntington Centre Topaz, Nachtegaallaan 5, 2225 SX Katwijk, The Netherlands
  2. 2Department of Public Health and Primary Care, Leiden University Medical Center, Post Zone V0-P, PO Box 9600, 2300 RC Leiden, The Netherlands


Background Most patients with HD which to stay at home as long as possible, if proper care can be provided. Patients need fully access to both caregivers, counsellors and informal caregivers. Patients and local medical staff seek knowledge on evidence based treatment.

IQare is an online communication platform that may provide both e-health- and e-learning solutions to meet these ends.

Methods Within the project, Topaz provides 80 patients living at home and their family with a shuttle PC and an individual IQare-account. They are able to make video calls to their practitioners at Huntington Centre Topaz (HCT).

Local practitioners and doctors will get an account of their own, giving them access to state of the art knowledge on HD. They can make a video call to specialist HD practitioners at HCT.

A triangle relationship is established between (1) patients/family and HCT (e-health); (2) HCT and local medical staff (knowledge sharing, e-learning); (3) local medical staff and HD-patients (professional care).

Results A Client Committee, consisting of committed family members, is directly linked to the project staff. The virtual platform has a database of information and instruction videos; as well as possibilities for video calling, agenda sharing, FAQ, forum, local news and fun and games. IQare has proven its efficacy in long term care in Scotland. Efficacy research will show whether IQare really contributes to the ability to stay at home as long as possible

Conclusion With the help of patients and their families it is possible to build a communication platform for e-health and e-learning.

  • e-health
  • e-learning
  • online treatment
  • at home

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