Distributed application of guideline-based decision support through mobile devices: Implementation and evaluation.

BACKGROUND: Traditionally guideline (GL)-based Decision Support Systems (DSSs) use a centralized infrastructure to generate recommendations to care providers, rather than to patients at home. However, managing patients at home is often preferable, reducing costs and empowering patients. Thus, we wanted to explore an option in which patients, in particular chronic patients, might be assisted by a local DSS, which interacts as needed with the central DSS engine, to manage their disease outside the standard clinical settings. OBJECTIVES: To design, implement, and demonstrate the technical and clinical feasibility of a new architecture for a distributed DSS that provides patients with evidence-based guidance, offered through applications running on the patients' mobile devices, monitoring and reacting to changes in the patient's personal environment, and providing the patients with appropriate GL-based alerts and personalized recommendations; and increase the overall robustness of the distributed application of the GL. METHODS: We have designed and implemented a novel projection-callback (PCB) model, in which small portions of the evidence-based guideline's procedural knowledge are projected from a projection engine within the central DSS server, to a local DSS that resides on each patient's mobile device. The local DSS applies the knowledge using the mobile device's local resources. The GL projections generated by the projection engine are adapted to the patient's previously defined preferences and, implicitly, to the patient's current context, in a manner that is embodied in the projected therapy plans. When appropriate, as defined by a temporal pattern within the projected plan, the local DSS calls back the central DSS, requesting further assistance, possibly another projection. To support the new model, the initial specification of the GL includes two levels: one for the central DSS, and one for the local DSS. We have implemented a distributed GL-based DSS using the projection-callback model within the MobiGuide EU project, which automatically manages chronic patients at home using sensors on the patients and their mobile phone. We assessed the new GL specification process, by specifying two very different, complex GLs: for Gestational Diabetes Mellitus, and for Atrial Fibrillation. Then, we evaluated the new computational architecture by applying the two GLs to the automated clinical management, at real time, of patients in two different countries: Spain and Italy, respectively. RESULTS: The specification using the new projection-callback model was found to be quite feasible. We found significant differences between the distributed versions of the two GLs, suggesting further research directions and possibly additional ways to analyze and characterize GLs. Applying the two GLs to the two patient populations proved highly feasible as well. The mean time between the central and local interactions was quite different for the two GLs: 3.95 ± 1.95 days in the case of the gestational diabetes domain, and 23.80 ± 12.47 days, in the case of the atrial fibrillation domain, probably corresponding to the difference in the distributed specifications of the two GLs. Most of the interaction types were due to projections to the local DSS (83%); others were data notifications, mostly to change context (17%). Some of the data notifications were triggered due to technical errors. The robustness of the distributed architecture was demonstrated through the successful recovery from multiple crashes of the local DSS. CONCLUSIONS: The new projection-callback model has been demonstrated to be feasible, from specification to distributed application. Different GLs might significantly differ, however, in their distributed specification and application characteristics. Distributed medical DSSs can facilitate the remote management of chronic patients by enabling the central DSSs to delegate, in a dynamic fashion, determined by the patient's context, much of the monitoring and treatment management decisions to the mobile device. Patients can be kept in their home environment, while still maintaining, through the projection-callback mechanism, several of the advantages of a central DSS, such as access to the patient's longitudinal record, and to an up-to-date evidence-based GL repository.

Assessment of a personalized and distributed patient guidance system.

OBJECTIVES: The MobiGuide project aimed to establish a ubiquitous, user-friendly, patient-centered mobile decision-support system for patients and for their care providers, based on the continuous application of clinical guidelines and on semantically integrated electronic health records. Patients would be empowered by the system, which would enable them to lead their normal daily lives in their regular environment, while feeling safe, because their health state would be continuously monitored using mobile sensors and self-reporting of symptoms. When conditions occur that require medical attention, patients would be notified as to what they need to do, based on evidence-based guidelines, while their medical team would be informed appropriately, in parallel. We wanted to assess the system's feasibility and potential effects on patients and care providers in two different clinical domains. MATERIALS AND METHODS: We describe MobiGuide's architecture, which embodies these objectives. Our novel methodologies include a ubiquitous architecture, encompassing a knowledge elicitation process for parallel coordinated workflows for patients and care providers; the customization of computer-interpretable guidelines (CIGs) by secondary contexts affecting remote management and distributed decision-making; a mechanism for episodic, on demand projection of the relevant portions of CIGs from a centralized, backend decision-support system (DSS), to a local, mobile DSS, which continuously delivers the actual recommendations to the patient; shared decision-making that embodies patient preferences; semantic data integration; and patient and care provider notification services. MobiGuide has been implemented and assessed in a preliminary fashion in two domains: atrial fibrillation (AF), and gestational diabetes Mellitus (GDM). Ten AF patients used the AF MobiGuide system in Italy and 19 GDM patients used the GDM MobiGuide system in Spain. The evaluation of the MobiGuide system focused on patient and care providers' compliance to CIG recommendations and their satisfaction and quality of life. RESULTS: Our evaluation has demonstrated the system's capability for supporting distributed decision-making and its use by patients and clinicians. The results show that compliance of GDM patients to the most important monitoring targets - blood glucose levels (performance of four measurements a day: 0.87±0.11; measurement according to the recommended frequency of every day or twice a week: 0.99±0.03), ketonuria (0.98±0.03), and blood pressure (0.82±0.24) - was high in most GDM patients, while compliance of AF patients to the most important targets was quite high, considering the required ECG measurements (0.65±0.28) and blood-pressure measurements (0.75±1.33). This outcome was viewed by the clinicians as a major potential benefit of the system, and the patients have demonstrated that they are capable of self-monitoring - something that they had not experienced before. In addition, the system caused the clinicians managing the AF patients to change their diagnosis and subsequent treatment for two of the ten AF patients, and caused the clinicians managing the GDM patients to start insulin therapy earlier in two of the 19 patients, based on system's recommendations. Based on the end-of-study questionnaires, the sense of safety that the system has provided to the patients was its greatest asset. Analysis of the patients' quality of life (QoL) questionnaires for the AF patients was inconclusive, because while most patients reported an improvement in their quality of life in the EuroQoL questionnaire, most AF patients reported a deterioration in the AFEQT questionnaire. DISCUSSION: Feasibility and some of the potential benefits of an evidence-based distributed patient-guidance system were demonstrated in both clinical domains. The potential application of MobiGuide to other medical domains is supported by its standards-based patient health record with multiple electronic medical record linking capabilities, generic data insertion methods, generic medical knowledge representation and application methods, and the ability to communicate with a wide range of sensors. Future larger scale evaluations can assess the impact of such a system on clinical outcomes. CONCLUSION: MobiGuide's feasibility was demonstrated by a working prototype for the AF and GDM domains, which is usable by patients and clinicians, achieving high compliance to self-measurement recommendations, while enhancing the satisfaction of patients and care providers.

Trust in telemedicine portals for rehabilitation care: an exploratory focus group study with patients and healthcare professionals.

BACKGROUND: For many eServices, end-user trust is a crucial prerequisite for use. Within the context of Telemedicine, the role of trust has hardly ever been studied. In this study, we explored what determines trust in portals that facilitate rehabilitation therapy, both from the perspective of the patient and the healthcare professional. METHODS: We held two focus groups with patients (total n = 15) and two with healthcare professionals (total n = 13) in which we discussed when trust matters, what makes up trust in a rehabilitation portal, what effect specific design cues have, and how much the participants trust the use of activity sensor data for informing treatment. RESULTS: Trust in a rehabilitation portal is the sum of trust in different factors. These factors and what makes up these factors differ for patients and healthcare professionals. For example, trust in technology is made up, for patients, mostly by a perceived level of control and privacy, while for healthcare professionals, a larger and different set of issues play a role, including technical reliability and a transparent data storage policy. Healthcare professionals distrust activity sensor data for informing patient treatment, as they think that sensors are unable to record the whole range of movements that patients make (e.g., walking and ironing clothes). CONCLUSIONS: The set of factors that affect trust in a rehabilitation portal are different from the sets that have been found for other contexts, like eCommerce. Trust in telemedicine technology should be studied as a separate subject to inform the design of reliable interventions.