JMIR Publications

ABSTRACT

Background:

Parkinson’s disease (PD) is a chronic, degenerative disorder which causes progressive neurologic deterioration with profound effect on the affected individual´s quality of life. 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 chronically ill patients. Its acceptance and role in PD care need to be elucidated both among patients and care givers.

Objective:

Our main objective was to develop a novel home-based monitoring system (EMPARK) with patient and clinician interface for improving 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 Communication Technology (ICT) development. Functionalities of the interfaces were subject of user-centric multi-step evaluation complemented by semantic analysis of the recorded end-user reactions. The ICT structure of EMPARK was evaluated using the ICT4PEM patient empowerment model.

Results:

Software and hardware system architecture for collection and calculation of relevant parameters of disease management via home monitoring were established. We describe the patient interface and the functional characteristics and evaluation of a novel clinician interface. In accordance with our previous findings with respect to the patient interface, our current results indicate an overall high utility and user acceptance of the clinician interface. Special characteristics of EMPARK along key areas of interests emerged from the end-user evaluations with clear potential for future system development and deployment in daily clinical practice. Evaluation through the principles of ICT4PEM along with prior findings from the patient interface evaluation suggest that EMPARK has the potential to empower patients with PD.

Conclusions:

The EMPARK system is a novel home monitoring system for providing PD patients and the care team with feedback about 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 application in daily care and research.