People Centeredness, Chronic Conditions and Diversity Sensitive eHealth: Exploring Emancipation of the ‘Health Care System’ and the ‘Patient’ in Health Informatics

Abstract

Health care systems struggle to consistently deliver integrated high-quality, safe, and patient-centered care to all in an economically sustainable manner. Inequity of access to health care services and variation in diagnostic and treatment outcomes are common. Further, as health care systems become ever more complex, iatrogenesis and counter productivity have emerged as real dangers. In exploring this paradox, this paper considers a subset of those in society living with chronic conditions. Their attributes and circumstances have led to them being marginalized or excluded from ‘end-user’ engagement and/or from their requirements being incorporated into technology supported chronic disease management initiatives. Significantly, these citizens are often the most vulnerable and socially disadvantaged and tend to achieve poorer results and cost more per capita than the ‘average patient’ in their interactions with the health care system. Critically, this paper argues that a truly people-centered technology supported chronic care system can only be designed by understanding and responding to the needs, attributes and capabilities of the most vulnerable in society. This paper suggests innovative ways of supporting interactions with these ‘end-users’ and highlights how reflection on these approaches can contribute to emancipating the health system to move towards more socially inclusive eHealth solutions.

Keywords

• eHealth
• end-user
• chronic disease
• participatory design
• socio-technical
• diversity in care