Turning to Peers: Integrating Understanding of the Self, the Condition, and Others’ Experiences in Making Sense of Complex Chronic Conditions

Abstract

Abstract. People are increasingly involved in the self-management of their own health, including chronic conditions. With technology advances, the choice of self-management practices, tools, and technologies has never been greater. The studies reported here investigated the information seeking practices of two different chronic health populations in their quest to manage their health conditions. Migraine and diabetes patients and clinicians in the UK and the US were interviewed about their information needs and practices, and representative online communities were explored to inform a qualitative study. We found that people with either chronic condition require personally relevant information and use a broad and varied set of practices and tools to make sense of their specific symptoms, triggers, and treatments. Participants sought out different types of information from varied sources about themselves, their medical condition, and their peers' experiences of the same chronic condition. People with diabetes and migraine expended great effort to validate their personal experiences of their condition and determine whether these experiences were 'normal'. Based on these findings, we discuss the need for future personal health technologies that support people in engaging in meaningful and personalised data collection, information seeking, and information sharing with peers in flexible ways that enable them to better understand their own condition.

Designing for reflection on shared HIV health information

“…It has been shown that people living with a variety of chronic conditions, e.g. people with diabetes, chronic migraines, and ALS [20,11] turn to their peers to gain support and help in understanding their personal health experiences. HIV is now considered a chronic condition [12], and chronic conditions come with individualized triggers, symptoms, and treatments [20].…”

“…Individuals might improve their reflective process with support from experts or mentors [17] or by exploring another person's information [5,17]. Recent research has investigated individuals turning to their peers via online forums to share and better understand their personal health information, for example to determine whether their personal health information was 'normal' [20], or wanting to know what caused a reaction or a specific symptom [5].…”

“…Recent work in interaction design has turned to the use of design provocations, in which use and tensions can be explored with users in order to speculate about future technologies [1], for example, to investigate data for the quantified self [7]. Our provocations were based on work which focused on understanding the current practices and needs of people living with HIV [4,5] and diabetes [17,20]. Previous research on tracked and peer-shared information among people living with HIV revealed information types that it was important to include, such as the date of diagnosis, medication prescribed and the period over which it was taken, lab results at certain points in time, and the onset and duration of any reactions [4,5].…”

“…It has been argued that reflection by an individual on their health information using digital technologies is important for selfmanagement, especially when there are fluctuations in health [18]. However, research indicates that reflecting on personal health information alone may not always result in achieving new knowledge [20]. In the absence of frequent healthcare consultations, people living with HIV and other chronic diseases are turning to each other for support in managing their conditions, often sharing personal health information with others in online forums [5,20].…”

“…However, research indicates that reflecting on personal health information alone may not always result in achieving new knowledge [20]. In the absence of frequent healthcare consultations, people living with HIV and other chronic diseases are turning to each other for support in managing their conditions, often sharing personal health information with others in online forums [5,20]. We build on this to consider how digital technology might support people living with HIV in reflecting on shared personal health information.…”