Abstract
BackgroundWith 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.ObjectiveThe aim of this study was to develop a patient-centered innovation for patients with CML using a design thinking methodology.MethodsThe 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.ResultsThe 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.ConclusionsThe 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.
Highlights
BackgroundIn 2002, the World Health Organization reported about expecting dramatic changes in global health because of the rising prevalence of chronic health conditions, underscoring the necessity for innovations in health care to effectively manage long-term health problems [1], which requires a shift in the traditional roles of physicians and patients
The aim of developing CMyLife was to give patients the tools to monitor their results, interpret these results, and act on them. They are provided with the know-how to consider their results in relation to their personal care process
An easy-to-understand version of the Dutch chronic myeloid leukemia (CML) guideline connected to personal laboratory results was developed, which provides patients with the tools to take the lead in their own care process, enhancing patient empowerment and guideline adherence
Summary
BackgroundIn 2002, the World Health Organization reported about expecting dramatic changes in global health because of the rising prevalence of chronic health conditions, underscoring the necessity for innovations in health care to effectively manage long-term health problems [1], which requires a shift in the traditional roles of physicians and patients. Care for chronic illnesses should be patient-centered, resulting in an increased understanding and awareness of health, treatment options, symptoms, and behaviors [4,5] This patient-centeredness should be of major focus when facilitating innovation in health care. In other sectors, involving the end user of a product in its development is a common practice, and different kinds of human-centered approaches are available [6] One of these approaches is design thinking. 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 Both medication adherence by patients and guideline adherence by physicians are suboptimal, unnecessarily jeopardizing treatment outcomes
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