Design recommendations for developing health information system applications for use by persons with mild intellectual and developmental disabilities

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 46 design recommendations. Then  these recommendations transformed into design patterns that should be followed by the  developers of HIS applications. The evidence from this research revealed that usability,  accessibility, content, and gamification play an essential role in HIS development for persons  with mild IDD. Usability and Accessibility are closely related aspects in developing HIS for  everyone. Gamification and Content can make HIS specifically appropriate for persons with  mild IDD. Thus, this research developed guidance, presented in the form of design patterns for  developing HIS for persons with mild IDD. 

Conclusions - This research produced an empirically derived, evaluated, and validated set of  design recommendations for HIS development for persons with mild IDD. These  recommendations will support software developers in developing HIS for persons with mild  IDD. The unique contribution to knowledge is that these recommendations provide a structured  approach to address the challenges faced by persons with IDD when use HIS applications. The  software development industry needs to pay attention to the specific usability, accessibility,  content, and gamification needs of persons with IDD when developing HIS applications.