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.
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.
BACKGROUND C3-Cloud was an EU-funded multinational research project that aimed to facilitate personalized care and increase the empowerment of elderly people living with multimorbidity. ICT4PEM is a framework for the development, implementation, and evaluation of ICT-based interventions primarily targeting patient empowerment. OBJECTIVE We apply the ICT4PEM to analyze the ICT interventions and evaluation outcomes of the C3-Cloud pilot project with respect to patient empowerment. METHODS We used definitions of the ICT4PEM framework to identify and categorize the delivered C3-Cloud ICT platforms and sub-interventions based on their intentional relevance to patient empowerment strategies. We used the same framework to analyze the results from the final pilot evaluation with the purpose to identify the effects on patient empowerment characteristics and patient empowerment consequences, respectively RESULTS Based on the project design documents with pilot application requirements we identified the Patient Empowerment Platform (PEP) used by patients and the Coordinated Care & Cure Delivery Platform (C3DP) used by health professionals as having firm relevance for patient empowerment. The following patient empowerment characteristics were identified: Understanding, Control, Support, and Self-Efficacy. We identified these ICT strategies to achieve empowerment: Education, Communication, Engagement, Feedback, and Monitoring. Results with relevance to patient empowerment were from different assessment tools. We found various levels and a limited amount of supporting evidence for the possible positive effects on all dimensions of patient empowerment characteristics and patient empowerment consequences. This is despite the rather good technical acceptance of the system. Patient empowerment, although the main goal of the C3-Cloud project, was not defined within the project and there were no specific evaluation criteria. CONCLUSIONS C3-Cloud was a multinational research project that aims to redefine the care platform for multi-morbid elderly patients by creating common platforms for patients and different members of the care team along with multiple support functions. The ICT interventions of C3-Cloud were robust regarding their potential impact on patient empowerment and patient empowerment characteristic supported by our findings. Similarly, evaluation of C3-Cloud platform components reveals positive patient perceptions with respect to patient empowerment, although the data is limited. Our data also support the use of ICT4PEM as a tool for retrospective evaluation of ICT interventions with respect to their design architecture and results in patient empowerment.
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.
BACKGROUND Empowerment of patients is often an explicit goal of various Information and Communication Technology (ICT) interventions where the patients themselves use ICT tools via the internet. Although several models of empowerment exist, there is a lack of a comprehensive and pragmatic framework for the development of such interventions. OBJECTIVE This study proposes a framework for ICT 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, behaviour, 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 includes example indicators and associated measurement instruments. CONCLUSIONS This framework, which includes definitions, can be useful for the design and evaluation of ICT 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 generalisability of the model. CLINICALTRIAL
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