Patient perspectives on self-management technologies for Chronic Fatigue Syndrome, by Tabby Davies, Simon Jones, Ryan Kelly in CHI Conference on Human Factors in Computing Systems Proceedings (CHI 2019), May 4–9, 2019, Glasgow, Scotland UK, 13 pages. https://doi.org/10.1145/3290605. 3300452

Research abstract:

Chronic Fatigue Syndrome (CFS) is a debilitating condition that is characterised by a range of physical, cognitive and social impairments. However, a lack of clinical consensus around effective treatments for CFS means that patients typically engage in self-management of their symptoms.

In this paper we investigate CFS patients’ perspectives on the potential for technological support for their self-management practices.

We report findings from three studies in which people living with CFS

1. prioritised symptoms that they would like technologies to address,
2. articulated their current approaches to self-management alongside
   challenges they face, and
3. reflected on their experiences with three existing smartphone apps related to symptom management.

The findings provide insight into the specific needs of CFS patients and show how
their self-management goals diverge from the general notion of ‘self-tracking’ as currently understood by the HCI (Human-Computer Interaction) community. We also reflect on the ability of researchers to engage in a participatory process with individuals suffering from severely debilitating medical
symptoms.

CONCLUSION AND FUTUREWORK

This paper has explored the design of self-management technologies for people living with ME/CFS. Study 1 identified a list of symptoms prioritized by people with ME/CFS, giving immediate direction for the design of condition-specific support. Study 2 identified a need for solutions that assist existing self-management practices such as activity pacing and fatigue monitoring. Study 3 revealed specific positive and negative design features through participants’ responses to a series of commercial apps. Collectively, our studies illustrate the specific needs of people with ME/CFS and provide further evidence that chronic conditions bring unique concerns that must influence technology design [11, 56].

Based on our study, we see several opportunities for future work.

First, our recommendations can support the design of tailored self-management applications that should be tested in conjunction with ME/CFS patients, such that they have an ongoing stake in the design process [42].

Second, our design recommendations are based on patients’ needs and existing practices. However, it is important to recognise that our work does not incorporate the perspectives of clinicians, and these may be complementary in terms of understanding opportunities for self-management [48].

Finally, there may be opportunities to explore how technologies could support the collaboration that occurs between ME/CFS patients and their caregivers [55]. A number of participants in Study 2 acknowledged that they relied on family members for additional support. Future work could explore the design of collaborative applications that provide caregivers with a stake in the condition management process.