Qof Life Nmd

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ERCA Stressa 3-4 April 2009

Health & Medicine Education

“ Neuromuscular disorders - how to improve quality of life in patients with neuromuscular disease” Joan Escarrabill MD Master Plan of Respiratory Diseases (PDMAR) Institut d’Estudis de la Salut Barcelona [email_address] Stressa, April 4th 2009

MJA 2003; 179: 253–256 ,[object Object],[object Object],[object Object],... re-organising healthcare systems to maximise the partnerships of patients and doctors in managing chronic disease .

Health care system Direct access to the team Waiting time Fragmentation

Working for patients on home mechanical ventilation Organized by: With the contribution of: Welcome Benvinguts Bienvenidos

Technological innovation Care & organization Real life

Quality of life Autonomy: to decide Mobility Social networks Caregiver support

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A multidisciplinary reflexion on health issues of the 21st century could lead to innovative solutions. One of the challenges to overcome in the coming decades is how to support the increasing number of chronic patients in a pressured healthcare ecology. Patients in chronic disease management are expected to increasingly use Information and Communication Technology (ICT) for self-care during their treatment process and for co-decision with health care providers. The application of these types of information and communication technology is looked upon as one of the ways to get both patients and healthcare providers more involved in their treatment and to increase the health related quality of care, according to the WHO. Connecting patients and health care professionals would not only improve the technical system of communicating but also triggers social innovations of care models in which new ways of interacting and deciding improves the diagnostics and treatment. So far, a general overview of the extent and nature of published research involving this subset of ICT-interventions is lacking. Based on a scoping review conducted by Wildevuur e.o cancer was chosen as a case study to research how ICT could support cancer-patients in a person-centred approach to care.

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