title: Health information exchange in general practice care for people with intellectual disabilities--a qualitative review of the literature.
abstract: Many barriers to the provision of general practice (GP) care for people with intellectual disabilities (ID) relate to problems in exchanging health information. Deficits in the exchange of health information may have an adverse impact on healthcare access and health outcomes in individuals with ID. The aim of this paper is to report how health information exchange (HIE) in GP care for people with ID is being described in the ID healthcare literature. Thematic analysis of 19 included articles resulted in six major themes: (1) communication skills; (2) organisational factors; (3) record keeping and sharing; (4) health literacy and self-advocacy; (5) carers and health professionals' knowledge; and (6) third parties. The results indicate that HIE takes place in a chain of events happening before, during, and after a medical consultation, depending on specific contextual care factors. The included papers lack a broad focus on the entire HIE process, and causes and effects of gaps in health information are described only marginally or on a very general level. However, a study of the HIE process in its entirety is imperative in order to identify weak links and gaps in information pathways. The themes presented here provide a starting point for an in-depth study on the HIE process in GP care for individuals with ID that may facilitate future research on health interventions in this setting.
authors.affiliation: Radboud University Medical Center, Department of Primary and Community Care - Intellectual Disabilities and Health, Internal Post and Route 152, P.O. Box 9101, 6500 HB Nijmegen, The Netherlands. Electronic address: m.mastebroek@radboudumc.nl.
authors.forename: M
authors.initials: M
authors.lastname: Mastebroek
authors.affiliation: Radboud University Medical Center, Department of Primary and Community Care - Intellectual Disabilities and Health, The Netherlands. Electronic address: Jenneken.Naaldenberg@radboudumc.nl.
authors.forename: J
authors.initials: J
authors.lastname: Naaldenberg
authors.affiliation: Radboud University Medical Center, Department of Primary and Community Care, The Netherlands. Electronic address: Toine.Lagro@radboudumc.nl.
authors.forename: A L
authors.initials: AL
authors.lastname: Lagro-Janssen
authors.affiliation: Radboud University Medical Center, Department of Primary and Community Care - Intellectual Disabilities and Health, The Netherlands. Electronic address: Henny.Lantman@radboudumc.nl.
authors.forename: H
authors.initials: H
authors.lastname: van Schrojenstein Lantman de Valk
mesh_terms: D058006:General Practice / Q000379:methods / Q000458:organization & administration; D066275:Health Information Exchange; D057220:Health Literacy; D006297:Health Services Accessibility; D006801:Humans; D008607:Intellectual Disability; D011320:Primary Health Care / Q000379:methods*; D036301:Qualitative Research
keywords: Access to healthcare; Health information exchange; Intellectual disabilities; Primary healthcare; Review