The broad, long-term goal of this work is to improve health care quality through the development of consumer health IT that is responsive to the needs and preferences of diverse patient subpopulations. As health care shifts to home- and community-based settings, multiple forms of consumer health IT are being created to support patients with their self-management responsibilities. However, the design of consumer health IT is rarely grounded in an in-depth assessment of the needs and preferences of marginalized populations who face barriers to both technology use and active participation in their health care. Consequently, the objective of this study is to develop consumer health IT design guidance for one marginalized patient subpopulation, individuals with physical, sensory, and cognitive disabilities. This design guidance will focus on one form, mobile health applications, and one functional domain, health information communication with social network members (e.g., family members, friends, acquaintances). This objective will be accomplished through three specific aims: 1) to assess individuals with disabilities' existing health information communication practices with social network members from a systems perspective; 2) to identify the challenges individuals with disabilities face in leveraging existing mobile consumer health IT solutions for health information communication with social network members from a systems perspective; and 3) to cooperatively (i.e., in partnership with individuals with disabilities) generate descriptive and prescriptive design guidance for consumer health IT based on an explication of existing practices and challenges. This multi-method study will be grounded in macroergonomic theory and will consist of three phases. In Phase One, descriptive design guidance will be generated based on interviews of individuals with disabilities' current health information communication practices. In Phase Two, descriptive design guidance will be generated based on the application of task analysis and journaling methods to understand the challenges that individuals with disabilities face in using existing consumer health IT solutions. In Phase Three, design sessions will be used to translate descriptive into prescriptive design guidance. Purposeful sampling strategies will be employed to ensure that the study population is inclusive of individuals with a wide range of physical, cognitive, and sensory disabilities as well as both genders and the racial and ethnic groups of interest to AHRQ. The proposed study, therefore, will improve health care quality by building a foundation for consumer health IT that meets the needs and preferences of individuals with physical, sensory, and cognitive disabilities, which are often unaccounted for in standard consumer health IT design processes. This work will serve as a platform for future research efforts, which will 1) assess the feasibilit and value of integrating this form of design guidance into the design process and 2) assess the impact of consumer health IT grounded in this design guidance on outcomes including use, usefulness, usability, satisfaction, and, ultimately, health outcomes.
The purpose of this project is to improve health care quality by creating design guidance for consumer health IT that is responsive to the needs and preferences of individuals with physical, cognitive, and sensory disabilities. Development of this design guidance will help ensure that tools supporting patient engagement are accessible and meaningful to this population, which continues to face challenges in accessing and using components of the health care system. Given the high prevalence of disability in multiple minority groups, development of consumer health IT grounded in this design guidance will also contribute to the reduction of racial and ethnic health care disparities.