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The Importance of Disease Burden Considerations in Health Technology Development and Assessment of Self-Management Systems for Chronic Disease Patients

Sharing self management system with patient

Today there is an increasing demand on patients with chronic disease to perform their own disease management where they are required to make many daily decisions on how to self-manage and cope with their illness (Bodenheimer et al., 2002; Huber et al., 2011). On the one hand this means a more central and empowered role in the care management process. On the other hand, this role also places the patient in a position of being more responsible for their own care which can be very demanding (May et al., 2014).

For different chronic conditions it is increasingly recognized that health technology, and self-management systems, can be of great use in helping to facilitate this management and to assist the patient (Greenwood et al., 2017; May et al., 2014). Usability, or making the system as usable as possible for the patient, is one aspect that has been brought to the fore as an important component to make the self-management process easier to handle. In this context the patient disease burden as a whole must, however, be considered. The disease burdens for patients with chronic conditions can, as stated, be considerable and often amount to significant adaptations and modifications for patients in their daily life (Tran et al., 2015).

As nurses we are concerned with assisting to ease the burdens of disease for patients in different ways and increasingly the literature has brought attention to aspects such as the need for minimally disruptive medicine (May et al., 2009; Tran et al., 2015) in connection to these self-management systems and when it comes to patient use (Greenwood et al., 2017). Authors have for example emphasized that both the burden of the chronic disease itself as well as its treatment can be considerable for patients, so it is important that any type of technological support that they utilize does not contribute to this burden in a negative way, both in terms of needing to perform extensive work and also due to heavy cognitive demands for patients (Tran et al., 2015). They see a danger that if burdens on the patients accumulate even more, due to the use of these technologies and to what patients already experience with their disease demands, they could become overwhelmed and discontinue the use which in turn can result in deteriorated health (May et al., 2014).

Authors have also found that in general many patients are interested in using health technologies for their disease management and also express that they like using technologies for self-management, but it is difficult for patients when applications are not adapted to their needs and requirements, which hampers their interest (Sarkar et al., 2016). Therefore, in designing health technology solutions that can both assist in making the chronic disease management easier as well as also facilitating for the person to engage in self-management, a priority has to be that such solutions do not add additional demands to a situation that is already burdensome (May et al., 2014).

One way to go about this is to make sure that an iterative as well as an adaptive way of working is adopted in the design process of these types of self-management technologies (Greenwood et al., 2017). There should be a focus on patient-centeredness and patient involvement and a stronger consideration for the influence of system burden on the patient both in the system development as well as the system assessment process. If it becomes clearer if and in what way the system itself influences the patient user, it also becomes much easier to pinpoint what needs to be done to assist patients and support them in their self-management work.

The views and opinions expressed in this blog or by commenters are those of the author and do not necessarily reflect the official policy or position of HIMSS or its affiliates.

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Bodenheimer, T., Lorig, K., Holman, H., & Grumbach, K. (2002). Patient self-management of chronic disease in primary care. Journal of the American Medical Association, 288, 2469-2475.

Greenwood, D. A., Gee, P. M., Fatkin, K. J., & Peeples, M. (2017). A systematic review of reviews evaluating technology-enabled diabetes self-management education and support. Journal of Diabetes Science and Technology, 11(5). 1015-1027.

Huber, M., Knottnerus, J. A., Green, L., Horst, H. V. D., Jadad, A. R., Kromhout, D., . . . Smid, H. (2011). How should we define health? British Medical Journal, 343(7817).

May, C. R., Eton, D. T., Boehmer, K., Gallacher, K., Hunt, K., Macdonald, S., . . . Shippee, N. (2014). Rethinking the patient: Using Burden of Treatment Theory to understand the changing dynamics of illness. BMC Health Services Research, 14, 281.

May, C., Montori, V. M., & Mair, F. S. (2009). We need minimally disruptive medicine. British Medical Journal, 339, b2803.

Sarkar, U., Gourley, G. I., Lyles, C. R., Tieu, L., Clarity, C., Newmark, L., . . . Bates, D. W. (2016). Usability of commercially available mobile applications for diverse patients. Journal of General Internal Medicine, 31(12), 1417-1426.

Tran, V-T., Barnes, C., Montori, V. M., Falissard, B., & Ravaud, P. (2015). Taxonomy of the burden of treatment: A multi-country web-based qualitative study of patients with chronic conditions. BMC Medicine, 13, 115.

Mattias Georgsson, PhD, MSc, MPH, RN has a Master of Science degree in Nursing and Master degrees in Health Informatics and Interaction Design. He completed his PhD in Applied Health Technology in the Spring of 2018. He currently holds a position as a Post-Doctoral Research Fellow in eHealth at University West, Sweden.