i Design Recommendations for Developing Health Information System Applications for use by Persons with Mild Intellectual and Developmental Disabilities

Abstract

Introduction- Persons with IDD remain among the most vulnerable members of society and frequently face numerous health information barriers. Persons with IDD experience unequal access to health information with limited resources or opportunities to exercise their rights and make informed choices. Within the healthcare environment, persons with IDD experience a disparity of health services availability compared with others, resulting in increased morbidity, poorer health status and reduced participation in health promotion activities. While the ultimate goal of providing health information is to inform, enable understanding, support decision-making and provide knowledge about taking action, there is a lack of evidence of how persons with IDD use Health Information Systems (HIS). There is a need for HIS development guidelines to make the HIS applications for persons with IDD. Research Aim and Objectives - This research aims to identify the factors of successful HIS applications for persons with mild IDD. To achieve the aim of this research, the following objectives were set: • To develop a set of design recommendations for designing and developing HIS applications for persons with mild IDD. • To provide designers/developers of HIS applications for persons with mild IDD with design recommendations in an easy-to-understand format. Methodology – A mixed methods study was undertaken incorporating five phases. The first phase identified the problem through initial literature review and a systematic review around research concerning HIS and persons with IDD. In this phase, the research gap was identified, and the first version of design recommendations was created, DR-HIS-IDD (Design Recommendations for the Development of HIS for the intellectual and developmental disabilities population). In the second phase, the researcher interviewed and observed the participants, and this phase produced the second version of DR-HIS-IDD. In this phase, an essential factor was discovered, which is “Gamification”. Little evidence exists involving persons with mild IDD having gamification-based interventions to use HIS applications. There is a knowledge gap as to what design recommendations are needed for the development of gamification solutions for persons with mild IDD. In the third phase, there were two steps: the researcher conducted a literature review on gamification for persons with IDD, and the researcher conducted an analysis of mobile apps based on user reviews. This phase produced the third version of recommendations. In the fourth phase, validation and evaluation, the researcher developed a mobile app and released it to the Apple store (iOS) platform, and the researcher analysed user reviews. The researcher also interviewed experts to validate the recommendations; experts were from one or more of the following areas: software development, user experience, health informatics, health care providers. This resulted in the final version of DR-HIS-IDD. Phases 1-4 resulted in a more comprehensive collection of recommendations than was previously available. In the fifth phase, the researcher transformed the definitive list of recommendations into design patterns. Results - From the literature, initial findings indicated that persons with IDD are faced with many challenges and factors when using HIS applications, including knowledge/training, HIS content, accessibility issues, usability issues and engagement. These initial factors were further derived and synthesised into four factors after interviewing and observing persons with IDD. These factors were usability, accessibility, content, and gamification. An initial set of 230 design recommendations was derived and synthesised into 48 design recommendations. Then these recommendations transformed into design patterns that should be followed by the developers of HIS applications. The evidence