Master thesis in Digital Design, 2015
Titel: “Patient-centered design of a mobile application for research in childhood leukemia: A study of the potential in the use of a mobile application for self-monitoring side effects in childhood leukemia”
In Denmark, about 50 children are hit by acute lymphoblastic leukemia every year, especially in the age group 2-7. Even though more than 75% of the children survive (Børnecancerfonden 2009) the disease still expose the family for stress and set new conditions of their family life. The treatment protocol can be improved, which have the interest of medical research in proportion to study the side effects from the chemotherapy. Side effects that both are life threatening and unpredictable during the treatment.
The area of medical research regarding families with childhood leukemia lacks focus on how the parents can be supported in their new important role as co-treatment provider and the collaborative relation they have to the clinic. The role of the parents is essential in proportion to the self-monitoring activity collecting patient data of the side effects. Therefore it is substantial to study how the parents possess abilities and qualities that have potential to bring patient reported outcome, not only beneficial for the medical research, but also for the parents and the child.
On this background; I want to study the potential, using a mobile application for self-monitoring side effects among children with leukemia in the age group 2-7 and how a mobile application can assist the parents’ need for collaboration, systematization and overview, so that a synthetisation between the clinician’s collection of research data and the parents’ meaningful use of the mobile application is supported.
To examine my problem statement I have preliminary looked into the field of both medical research and health technology with the scope to study the situation of the parents and technology supported treatment in health care, and what related work that has been done in these fields. This to identify what insufficiencies, potentials and challenges I could seek to expose/disclose in my empirical collection.
My study has included cooperation with Aarhus University Hospital and the research doctor who wants to study the side effects of the treatment. This cooperation allowed me to do observations in the clinical department for children with acute lymphoblastic leukemia at the hospital. Furthermore, interviews with the doctor and nurses from the department were conducted, together with the important views of the parents perspectives through 9 interviews. Parents to both former and current patients. The process of my thesis has been conducted from a interaction design approach where patient centered design and research through design (Zimmerman & Forlizzi 2008) have been in focus. This design process has led to a conceptual design, prototyping and evaluation (Rogers et al. 2011) on the basis of my theoretical framework and my empirical analysis.
My theoretical framework involve perspectives from both the medical research and the field of health technology. The field of medical research point to the conditions of the disease and the critical needs of the parents regarding their role as co-treatment provider and their need to collaborate with the staff at the clinic (Børnecancerfonden 2009; Aburn & Gott 2014; Hugger 2005; Pyke-Grimm et al. 1999). The research however, does not focus on how this can be supported further. My exposition of health technology uncovers potentials and challenges regarding the terms of patient reported outcome, self-monitoring, self-management, patient empowerment and mobile technology (Riiskjær et al 2014; Huniche & Olesen 2014; Lorig & Halman 2003; Anderson & Funnell 2010; Boulos et al. 2011). This research field point to potentials like support of consultation, improvement of treatment and collaboration, and increased feeling of control and overview. However, this field also leaves essential questions for my problem statement. These questions have pushed my empirical focus towards seeking out whether the parents possess patient empowerment and a readiness to practice self-monitoring and self-management.
On the basis of my theoretical framework I have presented my empirical analysis. This includes the research requirements regarding monitoring the side effects and the needs of the clinical practice. Related to his research, the doctor has an interest in monitoring mucositis and the clinical practice sees both potentials and challenges regarding using a mobile application for this purpose. The analysis of the parents needs showed that the parents already are monitoring side effects and furthermore are using different kinds of systematizing in correlation with the treatment. Actions of self-monitoring patient reported outcome and self-management are with the parents existing patient empowerment a result of their diseased child, are therefore already present. This leads to my design openings that points to the potential of supporting an action by the parents that the research doctor wants is already happening. But just not yet delivered to the doctor or systematized in any way. In this way, the demands of the research project, the parents needs and the clinical practice can figure in a synthetisation where all benefits differently in the same action.
My design concept is a visualization and an articulation of the synthetisation between the research demands, the parents needs and the clinical practice. This concept includes a mobile application for smartphones, where the parents can register mucositis in a simple and easy way. Furthermore they can also add monitorings of their own needs, like fever, pain or vomit. Two parents have tested this concept.
Finally, I have discussed how the clinical practice has a significant role in the synthetisation of the research field and patients. The treatment providers and not the researchers are the ones in the lead when it comes to the main interaction and collaboration with the patient and relatives. This knowledge is a result of my thesis process and applicable to the health care sector where desire to maintain the trust between medical researchers and citizens is wanted.