State of the practice of health information systems: a survey study amongst health care professionals in intellectual disability care

BACKGROUND: Care for people with an Intellectual Disability (ID) is complex: multiple health care professionals are involved and use different Health Information Systems (HISs) to store medical and daily care information on the same individuals. The objective of this study is to identify the HISs needs of professionals in ID care by addressing the obstacles and challenges they meet in their current HISs. METHODS: We distributed an online questionnaire amongst Dutch ID care professionals via different professional associations and care providers. 328 respondents answered questions on their HISs. An inventory was made of HIS usage purposes, problems, satisfaction and desired features, with and without stratification on type of HIS and care professional. RESULTS: Typical in ID care, two types of HISs are being used that differ with respect to their features and users: Electronic Client Dossiers (ECDs) and Electronic Patient Dossiers (EPDs). In total, the respondents mentioned 52 unique HISs. Groups of care professionals differed in their satisfaction with ECDs only. Both HIS types present users with difficulties related to the specifics of care for people with an ID. Particularly the much needed communication between the many unique HISs was reported a major issue which implies major issues with inter-operability. Other problems seem design-related as well. CONCLUSION: This study can be used to improve current HISs and design new HISs that take ID care professionals requirements into account. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12913-021-07256-9.