Exploration of the Voice of the Patient in Learning Health Systems: A Socio-Technical Perspective.

Despite learning health systems' focus on including the patients in improving healthcare services, research shows they are still considered participants, not partners. This article aims to provide practical guidance for recognizing and including the Voice of the Patient (VoP) as data in a continuous LHS by describing how the VoP can present itself, how it can be incorporated into the LHS and the barriers and enablers for doing so. Five key domains were identified to consider when including the patient perspective. The use of technology could be a facilitator for patients to provide their perspectives. However, there is a risk of increased health inequity by reducing the VoP of patients with low health or digital literacy.

A Review of Requirements for Information Models in Learning Health Systems.

Learning Health System (LHS) and integrated care are challenged due to a fragmented health data landscape. An information model is agnostic to the underlying data structures and can potentially contribute to mitigating some of the gaps. In a research project, Valkyrie, we are exploring how metadata can be organized and used to promote service coordination and interoperability across levels of care. An information model is viewed as central in this context and as a future integrated LHS support. We examined the literature regarding property requirements for data, information and knowledge models in the context of semantic interoperability and an LHS. The requirements were elicited and synthesized into five guiding principles as a vocabulary to inform the information model design of Valkyrie. Further research on requirements and guiding principles for information model design and evaluation are welcomed.

Information Models Properties in Learning Health Systems: A Literature Review.

Learning Health Systems (LHS) are challenged by fragmented health data. In Valkyrie, information models (IM) are explored as translators for the underlying, fragmented data structures and can potentially extend to support a future LHS. In this paper, a literature review was performed to search for property requirements for semantic interoperable IMs in the context of an LHS. The literature was examined and property requirements elicited in the context of an LHS.

Quality, Usability, and Effectiveness of mHealth Apps and the Role of Artificial Intelligence: Current Scenario and Challenges.

The use of artificial intelligence (AI) and big data in medicine has increased in recent years. Indeed, the use of AI in mobile health (mHealth) apps could considerably assist both individuals and health care professionals in the prevention and management of chronic diseases, in a person-centered manner. Nonetheless, there are several challenges that must be overcome to provide high-quality, usable, and effective mHealth apps. Here, we review the rationale and guidelines for the implementation of mHealth apps and the challenges regarding quality, usability, and user engagement and behavior change, with a special focus on the prevention and management of noncommunicable diseases. We suggest that a cocreation-based framework is the best method to address these challenges. Finally, we describe the current and future roles of AI in improving personalized medicine and provide recommendations for developing AI-based mHealth apps. We conclude that the implementation of AI and mHealth apps for routine clinical practice and remote health care will not be feasible until we overcome the main challenges regarding data privacy and security, quality assessment, and the reproducibility and uncertainty of AI results. Moreover, there is a lack of both standardized methods to measure the clinical outcomes of mHealth apps and techniques to encourage user engagement and behavior changes in the long term. We expect that in the near future, these obstacles will be overcome and that the ongoing European project, Watching the risk factors (WARIFA), will provide considerable advances in the implementation of AI-based mHealth apps for disease prevention and health promotion.

Experiences and Expectations of Information and Communication Technologies in Flexible Assertive Community Treatment Teams: Qualitative Study.

BACKGROUND: Flexible Assertive Community Treatment (FACT) is a model of integrated care for patients with long-term serious mental illness. FACT teams deliver services using assertive outreach to treat patients who can be hard to reach by the health care service, and focus on both the patient's health and their social situation. However, in Norway, FACT team members have challenges with their information and communication (ICT) solutions. OBJECTIVE: The aim of this study was to explore Norwegian FACT teams' experiences and expectations of their ICT solutions, including electronic health records, electronic whiteboards, and calendars. METHODS: We gathered data in two phases. In the first phase, we conducted semistructured interviews with team leaders and team coordinators, and made observations in FACT teams targeting adults. In the second phase, we conducted semistructured group interviews in FACT teams targeting youth. We performed a thematic analysis of the data in a theoretical manner to address the specific objectives of the study. RESULTS: A total of 8 teams were included, with 5 targeting adults and 3 targeting youth. Due to the COVID-19 pandemic, we were not able to perform observations in 2 of the teams targeting adults. Team leaders and coordinators in all 5 teams targeting adults were interviewed, with a total of 7 team members participating in the teams targeting youth. We found various challenges with communication, documentation, and organization for FACT teams. The COVID-19 pandemic was challenging for the teams and changed the way they used ICT solutions. There were issues with some technical solutions used in the teams, including electronic health records, electronic whiteboards, and calendars. Lack of integration and access to data were some of the main issues identified. CONCLUSIONS: Despite the FACT model being successfully implemented in Norway, there are several issues regarding the ICT solutions they use, mainly related to access to data and integration. Further research is required to detail how improved ICT solutions should be designed. While FACT teams targeting adults and youth differ in some ways, their needs for ICT solutions are largely similar.

Use of e-Health in Norwegian FACT Teams: A User Perspective.

Flexible assertive community treatment (FACT) is a model for delivering long-term, integrated and comprehensive treatment and follow-up for patients with severe mental illness. The objective of this study was to examine ICT challenges of Norwegian FACT teams. Doing observations in 3 teams and interviews with 5 teams we examined use of ICT systems, identifying challenges with the use of the electronic whiteboards, electronic health records, and team calendars. Better ICT systems and infrastructure are needed to support Norwegian FACT teams.

Implementation of the Flexible Assertive Community Treatment (FACT) Model in Norway: eHealth Assessment Study.

BACKGROUND: Flexible Assertive Community Treatment (FACT) is a model for treatment of long-term severe mental disorders. This method has become more widespread in Norway. OBJECTIVE: The objective of our study was to examine how the implementation of FACT teams in Norway has been affected by eHealth policy, infrastructure, and regulations. Another objective was to examine existing literature on eHealth interventions and challenges within FACT teams. METHODS: We have examined Norwegian policy regulating mental health services, laws and regulations, eHealth infrastructure, relevant literature on FACT teams, and current implementation of FACT in Norway. RESULTS: FACT teams are a wanted part of the Norwegian service system, but the current eHealth infrastructure makes sharing of data within teams and levels of health care challenging, even if eHealth regulations allow such sharing. This has been shown to be an issue in the current implementation of FACT teams in Norway. There is little or no existing research on the eHealth challenges facing FACT teams. CONCLUSIONS: Weaknesses in the Norwegian eHealth infrastructure have been a barrier for an easy implementation of FACT teams in Norway. It is difficult to share information between the different levels of health care. We need systems that allow for easy, secure sharing of health information to and between the FACT team members and other involved health care workers.

Cluster Detection Mechanisms for Syndromic Surveillance Systems: Systematic Review and Framework Development.

BACKGROUND: The time lag in detecting disease outbreaks remains a threat to global health security. The advancement of technology has made health-related data and other indicator activities easily accessible for syndromic surveillance of various datasets. At the heart of disease surveillance lies the clustering algorithm, which groups data with similar characteristics (spatial, temporal, or both) to uncover significant disease outbreak. Despite these developments, there is a lack of updated reviews of trends and modelling options in cluster detection algorithms. OBJECTIVE: Our purpose was to systematically review practically implemented disease surveillance clustering algorithms relating to temporal, spatial, and spatiotemporal clustering mechanisms for their usage and performance efficacies, and to develop an efficient cluster detection mechanism framework. METHODS: We conducted a systematic review exploring Google Scholar, ScienceDirect, PubMed, IEEE Xplore, ACM Digital Library, and Scopus. Between January and March 2018, we conducted the literature search for articles published to date in English in peer-reviewed journals. The main eligibility criteria were studies that (1) examined a practically implemented syndromic surveillance system with cluster detection mechanisms, including over-the-counter medication, school and work absenteeism, and disease surveillance relating to the presymptomatic stage; and (2) focused on surveillance of infectious diseases. We identified relevant articles using the title, keywords, and abstracts as a preliminary filter with the inclusion criteria, and then conducted a full-text review of the relevant articles. We then developed a framework for cluster detection mechanisms for various syndromic surveillance systems based on the review. RESULTS: The search identified a total of 5936 articles. Removal of duplicates resulted in 5839 articles. After an initial review of the titles, we excluded 4165 articles, with 1674 remaining. Reading of abstracts and keywords eliminated 1549 further records. An in-depth assessment of the remaining 125 articles resulted in a total of 27 articles for inclusion in the review. The result indicated that various clustering and aberration detection algorithms have been empirically implemented or assessed with real data and tested. Based on the findings of the review, we subsequently developed a framework to include data processing, clustering and aberration detection, visualization, and alerts and alarms. CONCLUSIONS: The review identified various algorithms that have been practically implemented and tested. These results might foster the development of effective and efficient cluster detection mechanisms in empirical syndromic surveillance systems relating to a broad spectrum of space, time, or space-time.

Alarm Fatigue vs User Expectations Regarding Context-Aware Alarm Handling in Hospital Environments Using CallMeSmart.

Surveys and research show that mobile communication systems in hospital settings are old and cause frequent interruptions. In the quest to remedy this, an Android based communication system called CallMeSmart tries to encapsulate most of the frequent communication into one hand held device focusing on reducing interruptions and at the same time make the workday easier for healthcare workers. The objective of CallMeSmart is to use context-awareness techniques to automatically monitor the availability of physicians' and nurses', and use this information to prevent or route phone calls, text messages, pages and alarms that would otherwise compromise patient care. In this paper, we present the results from interviewing nurses on alarm fatigue and their expectations regarding context-aware alarm handling using CallMeSmart.

Human Factors for Nursing: From In-Situ Testing to Mobile Usability Engineering.

The tutorial goal is to familiarize participants with human aspects of health informatics and human-centered approaches to the design, evaluation and deployment of both usable and safe healthcare information systems. The focus will be on demonstrating and teaching practical and low-cost methods for evaluating mobile applications in nursing. Basic background to testing methods will be provided, followed by live demonstration of the methods. Then the audience will break into small groups to explore the application of the methods to applications of interest (there will be a number of possible applications that will be available for applications in areas such as electronic health records and decision support, however, if the groups have applications of specific interest to them that will be possible). The challenges of conducting usability testing, and in particular mobile usability testing will be discussed along with practical solutions. The target audience includes practicing nurses and nurse researchers, nursing informatics specialists, nursing students, nursing managers and health informatics professionals interested in improving the usability and safety of healthcare applications.

Telemonitoring in Cystic Fibrosis: A 4-year Assessment and Simulation for the Next 6 Years.

BACKGROUND: Innovative technologies and informatics offer a wide range of services to health districts, doctors, nurses, and patients, and is changing the traditional concept of health care. In the last few years, the availability of portable devices, their easiness to transport and use, and the capability to collect and transmit various clinical data have resulted in the fast development of telemedicine. However, despite its potential impact in improving patient conditions, and its cost effectiveness reported in literature, telemedicine is not in daily practice. OBJECTIVE: The aim of this study is to provide evidence of the positive impact of telemonitoring proving the sustainability of an application by sending spirometry outcomes from patients' homes to the hospital doctors via the Internet, and from doctors to patients by an additional phone call solution. METHODS: We examined collected data related to clinical improvement of patients with cystic fibrosis (CF). The patients were followed-up at home using telemonitoring for a period of 10 years, with the aims to prove the sustainability of the methodology (transmissions of spirometry from the patients' home to the doctors and feedback from the doctors to the patients by phone call from the hospital). We stored and analyzed all spirometry transmissions received, and tested the possible presence to decrease the costs between the standard clinical trial (only ambulatory visits) and standard clinical trial with telemonitoring for the follow-up of patients with CF (telemedicine). This was done through an economic analysis of the costs for patients followed at home by telemonitoring. We assessed four years of observation and a simulation of total long-term costs between 2010 and 2020. RESULTS: We discovered a potential saving of €40,397.00 per patient for 10 years, actualized at €36,802.97 for the follow-up of all patients enrolled. CONCLUSIONS: The results from the study suggest that telemedicine can improve the health of patients with CF. It is a relatively cheap and potentially sustainable solution, compared to standard clinical trials. However, to establish and prove the long-term effectiveness and cost-effectiveness, more controlled psychological and behavioral studies are needed.

Which indicators for measuring the daily physical activity? An overview on the challenges and technology limits for Telehealth applications.

BACKGROUND: Obesity is one of the biggest drivers of preventable chronic diseases and healthcare costs in Worldwide. Different prevention activities are suggested. By monitoring daily energy expenditure (EE) could be possible make personalized diets and programming physical activity. In this, physical inactivity is one of the most important public health problems. Some studies refer the effort of the international community in promoting physical activities. Physical activity can be promoted only by increasing citizens' empowerment on taking care of their health, and it passes from the improving of individual information. Technology can offer solutions and metrics for monitoring and measuring daily activity by interacting with individuals, sharing information and feedbacks. OBJECTIVE: In this study we review indicators of total energy expenditure and weaknesses of available devices in assessing these parameters. METHODS: Literature review and technology testing EuNetHta core model. RESULTS: For the clinical aspects, it is fundamental to take into account all the factor that can influence the personal energy expenditure as: heart rate, blood pressure and thermoregulation (influenced by the body temperature). DISCUSSION: In this study we focused the attention on the importance of tools to encourage the physical activity. We made an analysis of the factor that can influence the right analysis of energy expenditure and at the same time the energy regime. A punctual monitoring of the exercise regime could be helpful in Telemedicine application as Telemonitorig. More study are needed to value the impact of physical activity tracker in Telemonitorig protocols. CONCLUSION: On the assessment of the energy expenditure, critical issues are related to the physiological data acquisition. Sensors connected with mobile devices could be important tools for disease prevention and interventions affecting health behaviors. New devices applications are potential useful for telemedicine assistance, but security of data and the related communication protocol limits should be taking into account.

Communication Pattern Regarding Alarms and Patient Signals Between Nurses, Other Health Care Actors, Patients and Devices.

CallMeSmart is a context aware communication system for hospitals. The system is being used by nurses and the physicians at the Oncology department, University Hospital of North Norway. CallMeSmart has been designed to increase the efficiency of communication between the nurse-physician and physician-physician. In this study, we have looked at the communication pathways between nurse-nurse and patient-nurse: how nurses define a preference of calling somebody, how alarms and tasks are prioritized, and how this could be implemented into the CallMeSmart system to improve the system for the nurses. This paper discusses how the communication pathways of the patient alarm system can be improved for health care actors in hospitals by revealing the communication patterns according to an alarm between those actors. We address the communication pattern between nurses, other health care actors, patients and the devices used, and discuss possible improvements of this communication.

User requirements for interruption management in mobile communications in hospitals.

In hospitals, mobile communication devices increase the occurrence of inappropriate interruptions during clinical task performance. These interruptions have been related to decreased quality of clinical care. User requirements were elicited using a scenario based approach. The results present insights into user requirements for an interruption management system for hospitals. Hospital workflow protocols were identified as a major source of interruptions. Many suggestions for managing these interruptions related to improving workflow using IT. We have shown that even though the hospital is an exceptionally demanding environment, the user requirements for interruption management concur with earlier findings in the broader fields of context aware interruption management and computer supported cooperative work.

Physicians interrupted by mobile devices in hospitals: understanding the interaction between devices, roles, and duties.

BACKGROUND: A common denominator of modern hospitals is a variety of communication problems. In particular, interruptions from mobile communication devices are a cause of great concern for many physicians. OBJECTIVE: To characterize how interruptions from mobile devices disturb physicians in their daily work. The gathered knowledge will be subsequently used as input for the design and development of a context-sensitive communication system for mobile communications suitable for hospitals. METHODS: This study adheres to an ethnographic and interpretive field research approach. The data gathering consisted of participant observations, non-structured and mostly ad hoc interviews, and open-ended discussions with a selected group of physicians. Eleven physicians were observed for a total of 135 hours during May and June 2009. RESULTS: The study demonstrates to what degree physicians are interrupted by mobile devices in their daily work and in which situations they are interrupted, such as surgery, examinations, and during patients/relatives high-importance level conversations. The participants in the study expected, and also indicated, that wireless phones probably led to more interruptions immediately after their introduction in a clinic, when compared to a pager, but this changed after a short while. The unpleasant feeling experienced by the caller when interrupting someone by calling them differs compared to sending a page message, which leaves it up to the receiver when to return the call. CONCLUSIONS: Mobile devices, which frequently interrupt physicians in hospitals, are a problem for both physicians and patients. The results from this study contribute to knowledge being used as input for designing and developing a prototype for a context-sensitive communication system for mobile communication suitable for hospitals. We combined these findings with results from earlier studies and also involved actual users to develop the prototype, CallMeSmart. This system intends to reduce such interruptions and at the same time minimize the number of communication devices needed per user.

The workload of web-based consultations with atopic eczema patients at home.

BACKGROUND: Atopic eczema is a chronic inflammatory non-contagious skin disease characterised by intensive itch and inflamed skin. Due to its chronic and relapsing course atopic eczema imposes a great burden on affected families. Review articles about home care telemedicine have indicated advantageous effects of home telehealth. However, few studies have investigated how home care telemedicine applications affect the workload of the clinician. METHODS: The use of a web-based counselling system was recorded through computerised logging. The doctor who answered the requests sent via the Internet recorded the amount of time needed for reading and answering 93 consecutive requests. RESULTS: The time needed by the physician to read and answer a request was less than 5 minutes in 60% of the cases. The doctor spent significantly more time to answer requests that had photographs attached compared to requests without photographs (P = 0.005). The time needed to answer requests received during the winter season (October-March) was significantly longer than the rest of the year (P = 0.023). There was no correlation between the answering time and the age of the patient. CONCLUSIONS: Individual web-based follow-up of atopic eczema patients at home is feasible. The amount of time needed for the doctor to respond to a request from the patient appears to be small. The answering time seems to depend on whether photographs are supplied and also on seasonal variations of disease activity. Since the management of atopic eczema is complex involving many different types of treatments and educational aspects, we expect this type of communication to be useful also to other chronic disease patients requiring close follow-up.

Web-based consultations for parents of children with atopic dermatitis: results of a randomized controlled trial.

AIM: To analyse how web-based consultations for parents of children with atopic dermatitis affect self-management behaviour, health outcome, health resource use and family costs. METHODS: Ninety-eight children with atopic dermatitis were randomly assigned to intervention and control groups. The intervention group received remote dermatology consultations through a secure web-based communication system. The control group was encouraged to seek treatment through traditional means such as general practitioner visits and hospital care. Both groups received an extensive individual educational session prior to the intervention. RESULTS: Thirty-eight percent of the intervention group used web-based consultations 158 times ranging from 1 to 38 consultations per patient. We found no change in self-management behaviour, health outcome or costs. The intervention group tended to have fewer visits to practitioners offering complementary therapies than the control group, and we found a positive correlation between emergency visits at baseline and messages sent. Both groups, however, reduced the mean number of skin care treatments performed per week and had fewer total health care visits after the intervention. CONCLUSION: We found no effect of supplementing traditional treatment for childhood dermatitis with web-based consultations. This study showed that web consultations is feasible, but more research is needed to determine its effect on self-management skills, health outcome and resource use.

Strategies to reduce interruptions from mobile communication systems in surgical wards.

We conducted interviews with two surgeons from the department of gastrointestinal surgery at the University Hospital of North Norway. The results confirmed that interruptions from mobile devices were a problem, especially in surgical theatres, outpatient wards, emergency wards and inpatient rooms. Users in hospitals, especially surgeons and physicians, need a better communication system. Our proposed system would intercept the signals from the existing communication system before they are sent out to the mobile devices. The signals would then be routed through a context-aware system, paired with context information and available rules defined by the doctor, which will decide what to do with the call/page. A single device which integrates both the pager and the phone system, and makes use of context information to control interruptions automatically yet allow the caller to decide whether to interrupt, would be highly appreciated by the users.