ABSTRACT
BACKGROUND: Parkinson disease (PD) is a chronic degenerative disorder that causes progressive neurological deterioration with profound effects on the affected individual's quality of life. Therefore, there is an urgent need to improve patient empowerment and clinical decision support in PD care. Home-based disease monitoring is an emerging information technology with the potential to transform the care of patients with chronic illnesses. Its acceptance and role in PD care need to be elucidated both among patients and caregivers. OBJECTIVE: Our main objective was to develop a novel home-based monitoring system (named EMPARK) with patient and clinician interface to improve patient empowerment and clinical care in PD. METHODS: We used elements of design science research and user-centered design for requirement elicitation and subsequent information and communications technology (ICT) development. Functionalities of the interfaces were the subject of user-centric multistep evaluation complemented by semantic analysis of the recorded end-user reactions. The ICT structure of EMPARK was evaluated using the ICT for patient empowerment model. RESULTS: Software and hardware system architecture for the collection and calculation of relevant parameters of disease management via home monitoring were established. Here, we describe the patient interface and the functional characteristics and evaluation of a novel clinician interface. In accordance with our previous findings with regard to the patient interface, our current results indicate an overall high utility and user acceptance of the clinician interface. Special characteristics of EMPARK in key areas of interest emerged from end-user evaluations, with clear potential for future system development and deployment in daily clinical practice. Evaluation through the principles of ICT for patient empowerment model, along with prior findings from patient interface evaluation, suggests that EMPARK has the potential to empower patients with PD. CONCLUSIONS: The EMPARK system is a novel home monitoring system for providing patients with PD and the care team with feedback on longitudinal disease activities. User-centric development and evaluation of the system indicated high user acceptance and usability. The EMPARK infrastructure would empower patients and could be used for future applications in daily care and research.
ABSTRACT
BACKGROUND: Empowerment of patients is often an explicit goal of various information and communications technology (ICT) (electronic, digital) interventions where the patients themselves use ICT tools via the internet. Although several models of empowerment exist, a comprehensive and pragmatic framework is lacking for the development of such interventions. OBJECTIVE: This study proposes a framework for digital interventions aiming to empower patients that includes a methodology that links objectives, strategies, and evaluation. METHODS: This study is based on a literature review and iterated expert discussions including a focus group to formulate the proposed model. Our model is based on a review of various models of empowerment and models of technology intervention. RESULTS: Our framework includes the core characteristics of the empowerment concept (control, psychological coping, self-efficacy, understanding, legitimacy, and support) as well as a set of empowerment consequences: expressed patient perceptions, behavior, clinical outcomes, and health systems effects. The framework for designing interventions includes strategies to achieve empowerment goals using different ICT services. Finally, the intervention model can be used to define project evaluations where the aim is to demonstrate empowerment. The study also included example indicators and associated measurement instruments. CONCLUSIONS: This framework, which includes definitions, can be useful for the design and evaluation of digital interventions targeting patient empowerment and assist in the development of methods to measure results in this dimension. Further evaluation in the form of interventional studies will be needed to assess the generalizability of the model.
