Priority-setting and feasibility of health information exchange for primary care patients with intellectual disabilities: A modified Delphi study

Objective: Accurate health information exchange (HIE) is fragile in healthcare for patients with intellectual disabilities (ID), threatening the health outcomes for this patient group. In conjunction with a group of experts, we aimed to identify the principal actions and organisational factors facilitating HIE for primary care patients with ID and to assess their perceived feasibility in daily practice. Methods: We conducted a two-round modified Delphi study with Dutch GPs (n = 22), support workers (n = 18) and ID physicians (n = 20). In an extensive set of 61 items covering actions and organisational factors, experts ranked items in order of importance and rated their feasibility. Results: Agreement was reached on the importance of 22 actions and eight organisational factors, of which 82% were deemed (very) feasible in daily practice. Experts stressed the importance of listed actions and factors being implemented simultaneously and remarked that further priority should be based on contextual demands. Conclusion and practice implications: This study indicates the principal actions and organisational factors for HIE regarding primary care patients with ID. The set can be used as a practical guide to optimise inter-professional cooperation and arrange the distribution of HIE roles and responsibilities in relation to this patient group.