Pilot Evaluation of the Health Passport (HSE) for People with Intellectual and Developmental Disabilities (PWIDD)

Purpose: People with Intellectual and Developmental Disabilities (PWIDD) have disparities in health outcomes that are in part due to communication barriers. The Health Passport (HSE) application was developed in Ireland to promote participation and inclusion of PWIDD in their own healthcare experience. This evaluation’s aim was to examine the acceptability, usability, and feasibility of the Health Passport (HSE) among three United States (US) stakeholder groups: PWIDD, care partners, and healthcare and community service providers. Methods: A sequential exploratory mixed-methods approach was used in this evaluation. In Phase 1, semi-structured qualitative interviews examined usability, acceptability, and feasibility of the Health Passport (HSE) and explored stakeholder suggestions for adaptations and improvements for use in US-based healthcare and community service encounters. In Phase 2, a nationwide stakeholder group survey assessed the Phase 1 suggestions and evaluated the outcomes of interest using three validated measures: Acceptability of Intervention Measure (AIM), Systems Usability Scale (SUS), and Feasibility of Intervention Measure (FIM). Results: In Phase 1, stakeholder interviews (n=18) found the Health Passport (HSE) to be widely acceptable, usable, and feasible and a detailed list of suggestions was compiled to improve the app. Phase 2 stakeholder (n=39) survey results were consistent with Phase 1 results. Conclusions: This evaluation provided researchers with clear recommendations to adapt the Health Passport (HSE) for use in US-based encounters and provided insight into methodology for a pilot intervention trial. Small sample sizes limited the generalizability of this evaluation. Further research efforts would assess a larger, more diverse group of stakeholders.