Joint efforts and shared responsibilities - Health information exchange in primary care for people with intellectual disabilities

Radboud University, 23 oktober 2017
Promotores : Schrojenstein Lantman, H.M.J. van, Lagro-Janssen, A.L.M. Co-promotores : Naaldenberg, J., Leusink, G.L.
Contains fulltext : 176470.pdf (publisher's version ) (Open Access)
People with intellectual disabilities (ID) have a considerably worse health than people without ID, for a great part related to the quality of healthcare provision and health communication. This research studied health information exchange (HIE) between people with ID, their support network, and general practices. The results show that inadequate HIE should be seen as a chain of events leading to less effective consultations, substandard treatment and insufficient patient follow-up. Although patients’ characteristics contribute strongly to HIE problems, the extent to which they exert an effect on HIE is particularly dependent on the degree to which the care environment is able to adjust to these characteristics. To a large extent, it is the organisational environment that in turn facilitates or hinders carers and health professionals in their efforts to adapt to patients’ characteristics. The results contain a prioritised set of actions and organisational factors perceived well feasible and conditional to effective HIE. The study concludes that, with regard to patient health information, there is considerable potential in patients themselves, but also in the collaboration between professionals, provided all parties involved feel a shared responsibility and willingness to invest time and energy.