Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Dec 22, 2022
Date Accepted: Jul 21, 2023
Participatory Action Research: method to improve, implement, and evaluate a real-life digital care platform.
ABSTRACT
Background:
It is unclear how to evaluate a continuously changing eHealth tool on its improvement and implementation in daily practice. A digital care platform, CMyLife, provides patient-centered care by empowering patients with chronic myeloid leukemia, focussing on making medication compliance insightful, discussable, and optimal, and achieving optimal control of the biomarker BCR-ABL1.
Objective:
The aim of this study was to investigate to what extent a participatory action research approach was suited for improvement and scientific evaluation of eHealth innovations in daily clinical practice (measured by user experiences) combined with promoting patient empowerment.
Methods:
The study used iterative cycles of planning, action, and reflection, whereby participants’ experiences (of patients, healthcare providers, the CMyLife-team, and app suppliers) with the platform determined next actions. Codesign workshops were the foundation of this cyclic process. Also, patients filled in two sets of questionnaires for assessing experiences with, the actual use of, and influence of CMyLife after three and at least six months. Data collected during the workshops were analysed using content analysis, often used for making a practical guide to action. Descriptive statistics were used to characterize the study population in terms of CML related information and socio-demographics, and to describe experiences with, and the actual use of the digital care platform CMyLife.
Results:
Codesign workshops provided insights that contributed to the improvement, implementation, and evaluation of CMyLife and empowered patients with chronic myeloid leukemia. For example, simplification of language, and improvement of user-friendliness of functionalities. Results of the questionnaires indicated that a. the platform improved information provision, b. use of the medication app improved patients’ medication compliance, c. use of the guideline app improved patients’ guideline adherence, and d. patients felt more empowered when using the platform.
Conclusions:
Participatory action research approach is suited to scientifically evaluate digital care platforms in daily clinical practice on its improvement, implementation, and patient empowerment. We advise to systemic iteratively evaluate users’ needs and wishes to keep care patient-centered and keep the innovation up-to-date and valuable to its users.
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