The Development of a Web-Based, Patient-Centered Intervention for Patients With Chronic Myeloid Leukemia (CMyLife): Design Thinking Development Approach

Abstract

Background With the global rise in chronic health conditions, health care is transforming, and patient empowerment is being emphasized to improve treatment outcomes and reduce health care costs. Patient-centered innovations are needed. We focused on patients with chronic myeloid leukemia (CML), a chronic disease with a generally good long-term prognosis because of the advent of tyrosine kinase inhibitors. However, both medication adherence by patients and guideline adherence by physicians are suboptimal, unnecessarily jeopardizing treatment outcomes. Objective The aim of this study was to develop a patient-centered innovation for patients with CML using a design thinking methodology. Methods The 5 phases of design thinking (ie, empathize, define, ideate, prototype, and test) were completed, and each phase started with the patient. Stakeholders and end users were identified and interviewed, and observations in the care system were made. Using tools in human-centered design, problems were defined and various prototypes of solutions were generated. These were evaluated by patients and stakeholders and then further refined. Results The patients desired (1) insights into their own disease; (2) insights into the symptoms experienced, both in terms of knowledge and comprehension; and (3) improvements in the organization of care delivery. A web-based platform, CMyLife, was developed and pilot-tested. It has multiple features, all targeting parts of the bigger solution, including a website with reliable information and a forum, a guideline app, personal medical records with logs of symptoms and laboratory results (including a molecular marker and linked to the guideline app), tailored feedback based on the patients’ symptoms and/or results, screen-to-screen consulting, delivery of medication, and the collection of blood samples at home. Conclusions The multifeatured innovation, CMyLife, was developed in a multidisciplinary way and with active patient participation. The aim of developing CMyLife was to give patients the tools to monitor their results, interpret these results, and act on them. With this tool, they are provided with the know-how to consider their results in relation to their personal care process. Whether CMyLife achieves its goal and the evaluation of the added value will be the focus of future studies. CML could become the first malignancy for which patients are able to monitor and manage their disease by themselves.

Effect of Digital Care Platforms on Quality of Care for Oncological Patients and Barriers and Facilitators for Their Implementation: Systematic Review

“…Of the clinical studies, four studies were of low quality [ 37 , 41 , 43 , 44 ], three of moderate quality [ 38 , 39 , 42 ], and one study was assessed as a high-quality study [ 40 ]. Regarding the barrier and facilitator studies, three studies were of low quality [ 49 , 51 , 53 ], one of moderate quality [ 48 ], and five were of high quality [ 45 - 47 , 50 , 52 ].…”

“…Despite these barriers, three studies showed that the use of a digital care platform is feasible [ 40 , 42 , 44 ]. Facilitators in practice were numerous: access to general and tailored medical information [ 42 , 45 , 47 - 49 , 52 ], full EMRs [ 39 , 42 , 45 - 48 , 50 - 52 ], and educational materials [ 42 , 47 ]. Moreover, the possibility to consult HCPs through interactive tools was mentioned to be a positive feature of a digital care platform that encouraged usage [ 43 , 44 , 47 , 48 , 50 ].…”

“…Patients learning about a change in their health and well-being via a digital care platform was a fear expressed by all oncologists included in two studies [ 45 , 48 ]. The second most frequently described barrier, described in seven studies [ 39 , 42 , 45 - 47 , 49 , 51 ], concerned the fear of increased workload such as an increased burden of documentation, monitoring, and direct digital communication with patients [ 39 , 42 , 45 , 49 ].…”

“…Facilitators at the patient level were numerous, as indicated in Table S2 of Multimedia Appendix 1 . In several studies, patients and oncologists mentioned that patients having access to the platform and their EMR could better prepare them for their doctor visit and enabled them to take on an active role during the consultation [ 45 - 47 ]. In addition, patients’ willingness to communicate via digital resources facilitated implementation [ 53 ].…”

“…Two studies mentioned the integration of the platform into existing systems as a barrier [ 44 , 47 ]. This would be especially relevant in cases in which the digital care platforms were also developed for other chronic diseases [ 47 ]. Limitations in time and resources were reported as another type of barrier [ 44 ].…”