To Örebro University

Patient empowerment (PE) is at the centre of the ongoing paradigm shift toward patient-centred healthcare. Novel health information technology (HIT) interventions frequently aim to improve PE and trigger changes in the healthcare. However, little is known about the actual efficacy of HIT to induce PE. The objective of this thesis is to study how HIT can improve PE. The thesis describes empirical research in C3-Cloud, an EU project developing broad HIT-based solutions for PE in multi-morbidity care; and in EMPARK, a homebased HIT monitoring system for PE in Parkinson disease. Theoretical research covers the systematic evaluation of shortcomings hindering HITs to induce PE, and the development of ICT4PEM, a framework for HIT development targeting PE. Empirical research was based on user-centric design for ICT artefact development and evaluation. Design science research was guiding the ICT4PEM development, including utility demonstration by applying it for the project-wide evaluation of the C3-Cloud and EMPARK regarding their design, interventions, evaluation and expected effects on PE. The thesis demonstrates empirical examples on how HIT contributes to PE by enabling multidisciplinary, patient-centric individual care plan elaboration, patient monitoring, patient-targeted and clinician feedback, and clinical decision support (CDS), including a clinical guideline based intelligent CDS for multi-morbidity. ICT4PEM is the first framework, which provides a patient-centric, HIT-friendly conceptual foundation for PE, and assists HIT development on targeting PE. The ICT4PEM-based evaluation revealed strength and weaknesses of C3-Cloud and EMPARK related to their design, interventions, evaluation and expected long-term effects. It also demonstrated a utility of ICT4PEM for retrospective HIT project evaluation. In summary, the thesis provides strong evidence and reveals shortcomings about HIT efficacy to promote PE. The novel ICT4PEM framework address and resolve these shortcomings with the capacity to guide future HIT developments which aim to empower patients.

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 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: C3-Cloud is an integrated care ICT infrastructure offering seamless patient-centered approach to managing multimorbidity, deployed in three European pilot sites. Challenge: The digital delivery of best practice guidelines unified for multimorbidity, customized to local practice, offering the capability to improve patient personalization and benefit.

METHOD: C3-Cloud has adopted a co-production approach to developing unified multimorbidity guidelines, by collating and reconciling best practice guidelines for each condition. Clinical and technical teams at pilot sites and the C3-Cloud consortium worked in tandem to create the specification and technical implementation.

RESULTS: C3-Cloud offers CDSS for diabetes, renal failure, depression and congenital heart failure, with over 300 rules and checks that deliver four best practice guidelines in parallel, customized for each pilot site.

CONCLUSIONS: The process provided a traceable, maintainable and audited digitally delivered collated and reconciled guidelines.

Empowerment of patients is today often an explicit goal of various ICT interventions where the patients themselves use ICT tools, often via the internet. This study is proposing a framework model for ICT interventions aiming to empower patients. Our new model includes different aspects of the Empowerment concept, general possible strategies to achieve Empowerment using different ICT services. Finally, the ICT services and the underlying strategic model can be used to define evaluations of such interventions where the aim is to demonstrate Empowerment. Our model is based on a review of various general models of Empowerment and the Behavioral Intervention Technology Model (BIT). The implications of our model are discussed using two case studies projects, the C3-Cloud EU project about empowering patients with 4 chronic diseases and the EMPARK project about Internet-of-Things sensors based real time feedback to Parkinson patients.

The number of patients with multimorbidity has been steadily increasing in the modern aging societies. The European C3-Cloud project provides a multidisciplinary and patient-centered “Collaborative Care and Cure-system” in the management of elderly with multimorbidity, enabling continous coordination of care activities between multidisciplinary care teams (MDTs), patients and informal care givers (ICG). In this paper, we report how various components of the infrastructure were tested to fulfill the functional requirements and how the entire system was subjected to an early application testing involving different groups of end-users. MDTs from participating European regions were involved in requirement elicitation and test formulation, resulting in 57 questions, distributed via an internet platform, to 48 test participants (22 MDTs, 26 patients) from three pilot sites. The results indicate an overall high level of satisfaction for all Information and Communication Technologie (ICT) components among the users. The early testing also provided user feedback important to consider for technical improvement of the entire system. 

Objective: This study aims to assess the effects of patient-directed feedback from remote symptom, medication, and disease activity monitoring on patient empowerment and treatment in Parkinson’s disease (PD).

Background: There is a need to empower patients with PD to be able to understand better and control their disease using prescribed medication and following recommendations on lifestyle. The research project EMPARK will develop an Internet of Things system of sensors, mobile devices to deliver real-time, 24/7 patient symptom information with the primary goal to support PD patients empowerment and better understanding of their disease. The system will be deployed in patient homes to continuously measure movements, time-in-bed and drug delivery from a micro-dose levodopa system. Subjective symptom scoring, time of meals and physical activities will be reported by the patients via a smartphone application. Interfaces for patients and clinicians are being developed based on the user center design methodology to ensure maximal user acceptance. 

Methods: This is a randomized controlled trial where 30 PD patients from 2 university clinics in Sweden will be randomized to receive (intervention group) or not (control group) continuous feedback from the results of the EMPARK home monitoring for 2 weeks. Disease-specific (UPDRS, PDQ-39), Quality of Life (QoL) (modified EuroQoL EQ-5D) and empowerment questionnaires will be collected prior and after the intervention. The correlation of technology-based objective and patient-reported subjective parameters will be assessed in both groups. Interviews will be conducted with the clinicians and observations will be made about the patient-clinician interaction to assess the potential treatment benefits of the intervention.

Results: Preliminary results from workshops with patients and clinicians show potential to improve patient empowerment and disease control among patients. Completion of the trial will show the degree of patient empowerment, individualized treatment, and patientclinician interactions.

Conclusions: Raising patients’ awareness about disease activity and home medication is possible among PD patients by providing them with feedback from the results of a home monitoring system. This randomized, controlled trial aims to provide evidence that this approach leads to improved patient empowerment and treatment results.