Consensus quality indicators for monitoring multiple sclerosis.

Multiple sclerosis (MS) as a chronic, degenerative autoimmune disease of the central nervous system has a longitudinal and heterogeneous course with increasing treatment options and risk profiles requiring constant monitoring of a growing number of parameters. Despite treatment guidelines, there is a lack of strategic and individualised monitoring pathways, including respective quality indicators (QIs). To address this, we systematically developed transparent, traceable, and measurable QIs for MS monitoring. Through literature review, expert discussions, and consensus-building, existing QIs were identified and refined. In a two-stage online Delphi process involving MS specialists (on average 53 years old and with 25 years of professional experience), the QIs were evaluated for content, clarity, and intelligibility, resulting in a set of 24 QIs and checklists to assess the quality of care. The final QIs provide a structured approach to document, monitor, and enhance the quality of care for people with MS across their treatment journey.

Building digital patient pathways for the management and treatment of multiple sclerosis.

Recent advances in the field of artificial intelligence (AI) could yield new insights into the potential causes of multiple sclerosis (MS) and factors influencing its course as the use of AI opens new possibilities regarding the interpretation and use of big data from not only a cross-sectional, but also a longitudinal perspective. For each patient with MS, there is a vast amount of multimodal data being accumulated over time. But for the application of AI and related technologies, these data need to be available in a machine-readable format and need to be collected in a standardized and structured manner. Through the use of mobile electronic devices and the internet it has also become possible to provide healthcare services from remote and collect information on a patient's state of health outside of regular check-ups on site. Against this background, we argue that the concept of pathways in healthcare now could be applied to structure the collection of information across multiple devices and stakeholders in the virtual sphere, enabling us to exploit the full potential of AI technology by e.g., building digital twins. By going digital and using pathways, we can virtually link patients and their caregivers. Stakeholders then could rely on digital pathways for evidence-based guidance in the sequence of procedures and selection of therapy options based on advanced analytics supported by AI as well as for communication and education purposes. As far as we aware of, however, pathway modelling with respect to MS management and treatment has not been thoroughly investigated yet and still needs to be discussed. In this paper, we thus present our ideas for a modular-integrative framework for the development of digital patient pathways for MS treatment.

[Digital health applications (DiGA) in the area of tension between progress and criticism : Discussion paper from the "Digital health" specialist group of the German Informatics Society]. / Digitale Gesundheitsanwendungen (DiGA) im Spannungsfeld von Fortschritt und Kritik : Diskussionsbeitrag der Fachgruppe "Digital Health" der Gesellschaft für Informatik e. V.

Since December 2019, digital health applications (DiGA) have been included in standard care in Germany and are therefore reimbursed by the statutory health insurance funds to support patients in the treatment of diseases or impairments. There are 48 registered DiGA listed in the directory of the Federal Institute of Drugs and Medical Devices (BfArM), mainly in the areas of mental health; hormones and metabolism; and muscles, bones, and joints. In this article, the "Digital Health" specialist group of the German Informatics Society describes the current developments around DiGA as well as the current sentiment on topics such as user-centricity, patient and practitioner acceptance, and innovation potential. In summary, over the past three years, DiGA have experienced a positive development, characterized by a gradually increasing availability of various DiGA and coverage areas as well as prescription numbers. Nevertheless, significant regulatory adjustments are still required in some areas to establish DiGA as a well-established instrument in long-term routine healthcare. Key challenges include user-centeredness and the sustainable use of the applications.

The telemedicine community readiness model-successful telemedicine implementation and scale-up.

To successfully scale-up telemedicine initiatives (TIs), communities play a crucial role. To empower communities fulfilling this role and increase end users' acceptance of TIs, support tools (from now on entitled artifacts) are needed that include specific measures to implement and scale up telemedicine. Addressing this need, the article introduces the Telemedicine Community Readiness Model (TCRM). The TCRM is designed to help decision-makers in communities to create a favorable environment that facilitates the implementation and scale-up of TIs. The TCRM is a practical tool to assess communities' readiness to implement TIs and identify aspects to improve this readiness. The development process follows a design-science procedure, which integrates literature reviews and semi-structured expert interviews to justify and evaluate design decisions and the final design. For researchers, the paper provides insights into factors that influence telemedicine implementation and scale-up (descriptive role of knowledge) on the community level. For practitioners, it provides a meaningful tool to support the implementation and scale-up of TIs (prescriptive role of knowledge). This should help to realize the potential of telemedicine solutions to increase access to healthcare services and their quality.

Assessing the Efficacy of a Virtual Assistant in the Remote Cardiac Rehabilitation of Heart Failure and Ischemic Heart Disease Patients: Case-Control Study of Romanian Adult Patients.

Cardiovascular diseases (CVDs) are the leading cause of mortality in Europe, with potentially more than 60 million deaths per year, with an age-standardized rate of morbidity-mortality higher in men than women, exceeding deaths from cancer. Heart attacks and strokes account for more than four out of every five CVD fatalities globally. After a patient overcomes an acute cardiovascular event, they are referred for rehabilitation to help them to restore most of their normal cardiac functions. One effective way to provide this activity regimen is via virtual models or telerehabilitation, where the patient can avail themselves of the rehabilitation services from the comfort of their homes at designated timings. Under the funding of the European Union's Horizon 2020 Research and Innovation program, grant no 769807, a virtual rehabilitation assistant has been designed for elderly patients (vCare), with the overall objective of supporting recovery and an active life at home, enhancing patients' quality of life, lowering disease-specific risk factors, and ensuring better adherence to a home rehabilitation program. In the vCare project, the Carol Davila University of Bucharest (UMFCD) was in charge of the heart failure (HF) and ischemic heart disease (IHD) groups of patients. By creating a digital environment at patients' homes, the vCare system's effectiveness, use, and feasibility was evaluated. A total of 30 heart failure patients and 20 ischemic heart disease patients were included in the study. Despite the COVID-19 restrictions and a few technical difficulties, HF and IHD patients who performed cardiac rehabilitation using the vCare system had similar results compared to the ambulatory group, and better results compared to the control group.

Costs and effects of telerehabilitation in neurological and cardiological diseases: A systematic review.

Introduction: Telerehabilitation in neurological and cardiological diseases is an alternative rehabilitation that improves the quality of life and health conditions of patients and enhances the accessibility to health care. However, despite the reported benefits of telerehabilitation, it is necessary to study its impact on the healthcare system. Methods: The systematic review aims to investigate the costs and results of telerehabilitation in neurological and cardiological diseases. MEDLINE and EMBASE databases were searched from 2005 to 2021, for studies that assess the costs and results of telerehabilitation compared to traditional rehabilitation (center-based programs) in neurological and cardiological diseases. A narrative synthesis of results was carried out. Results: A total of 8 studies (865 participants) of 430 records were included. Three studies were related to the costs and results of telerehabilitation in neurological diseases (specifically in stroke). In total, five studies assessed telerehabilitation in cardiological diseases (chronic heart failure, coronary heart disease, acute coronary syndrome, and cardiovascular diseases). The duration of the telerehabilitation ranged from 6 to 48 weeks. The studies included cost-analysis, cost-benefit, cost-effectiveness, or cost-utility. In total, four studies found significant cost/savings per person between $565.66 and $2,352.00 (p < 0.05). In contrast, most studies found differences in costs and clinical effects between the telerehabilitation performed and the rehabilitation performed at the clinic. Just one study found quality-adjusted life years (QALY) significant differences between groups [Incremental cost-effectiveness ratio (ICER) per QALY ($-21,666.41/QALY). Discussion: Telerehabilitation is an excellent alternative to traditional center rehabilitation, which increases the accessibility to rehabilitation to more people, either due to the geographical situation of the patients or the limitations of the health systems. Telerehabilitation seems to be as clinical and cost-effective as traditional rehabilitation, even if, generally, telerehabilitation is less costly. More research is needed to evaluate health-related quality of life and cost-effectiveness in other neurological diseases. Systematic review registration: [https://figshare.com/articles/journal_ contribution/Review_Protocol_Costs_and_effects_of_Telerehabilitation_in_ Neurological_and_Cardiological_Diseases_A_Systematic_Review/19619838], identifier [19619838].

All together now - patient engagement, patient empowerment, and associated terms in personal healthcare.

BACKGROUND: Patients as active partners in their personal healthcare are key drivers to reducing costs, securing an effective usage of resources, and ensuring patient-provider satisfaction. Even though these benefits are acknowledged, a theoretical framework for the plethora of concepts used in this context, such as patient engagement, patient empowerment, or patient involvement is missing. Furthermore, the heterogeneous or synonymous usage of these terms leads to miscommunication, missing standard conceptual measures, and a deficiency in theory building and testing. Our objective is to show what the relationships and distinctions between concepts focussing on patients as active partners in their personal healthcare are. METHODS: A systematic literature review was conducted to consolidate terms related to patients' having an active role in their healthcare. From 442 articles screened in PubMed, a final set of 17 papers was included. Any articles conceptualising or presenting relationships between the concepts were included. Information was synthesised, and contradictions were unravelled systematically. The concepts and their relationships are structured and represented by employing a concept map. RESULTS: Patient-centredness is a concept dominantly influenced by health care providers and can enhance patients' competencies, attitudes, and behaviours towards their personal healthcare. Enabling patients to become more empowered can ultimately lead to their greater involvement and engagement. Fostering an active role of patients can also increase their adherence to the care pathway. In general, patient engagement seems to be the most conclusive and furthest developed concept in terms of turning patients into active partners in their personal healthcare. CONCLUSIONS: We plead for a stricter demarcation and therefore a terminological standardisation of the terms in the future to avoid further ambiguity and miscommunication. The concept map presents a basis for a uniform understanding and application of the concepts. Through a comprehensive understanding of the terms and their dimensions, relationships between the concepts can be utilised, measures can be derived, and theory building and testing can be enhanced, leading to better acceptance and utilisation of concepts in healthcare services. Furthermore, patient engagement is presented to be the most conclusive and furthest developed concept in the subject area.

Patient Perception When Transitioning from Classic to Remote Assisted Cardiac Rehabilitation.

Cardiac rehabilitation is an individualized outpatient program of physical exercises and medical education designed to accelerate recovery and improve health status in heart disease patients. In this study, we aimed for assessment of patients' perception of the involvement of technology and remote monitoring devices in cardiac recovery. During the Living Lab Phase of the Virtual Coaching Activities for Rehabilitation in Elderly (vCare) project, we evaluated eleven patients (five heart failure patients and six ischemic heart disease patients). Patient admission in the UMFCD cardiology clinical department served as a shared inclusion criterion for both study groups. In addition, the presence of II or III heart failure NYHA stage status was considered an inclusion criterion for the heart failure study group and patients diagnosed with ischemic heart disease for the second one. We conducted a system usability survey to assess the patients' perception of the system's technical and medical functions. The survey had excellent preliminary results in the heart failure study group and good results in the ischemic heart disease group. The limited access of patients to cardiac rehabilitation in Romania has led to increased interest and motivation in this study. The final version of the product is designed to adapt to patient needs and necessities; therefore, patient perception is necessary.

Scale-up of Digital Innovations in Health Care: Expert Commentary on Enablers and Barriers.

Health care delivery is undergoing a rapid change from traditional processes toward the use of digital health interventions and personalized medicine. This movement has been accelerated by the COVID-19 crisis as a response to the need to guarantee access to health care services while reducing the risk of contagion. Digital health scale-up is now also vital to achieve population-wide impact: it will only accomplish sustainable effects if and when deployed into regular health care delivery services. The question of how sustainable digital health scale-up can be successfully achieved has, however, not yet been sufficiently resolved. This paper identifies and discusses enablers and barriers for scaling up digital health innovations. The results discussed in this paper were gathered by scientists and representatives of public bodies as well as patient organizations at an international workshop on scaling up digital health innovations. Results are explored in the context of prior research and implications for future work in achieving large-scale implementations that will benefit the population as a whole.

Virtual Coaching for Rehabilitation: The Participatory Design Experience of the vCare Project.

End-user involvement constitutes an essential goal during the development of innovative solution, not only for the evaluation, but also in codesign, following a user-centered strategy. Indeed, it is a great asset of research to base the work in a user-centered approach, because it allows to build a platform that will respond to the real needs of users. The aims of this work are to present the methodology adopted to involve end-users (i.e., neurological patients, healthy elderly, and health professionals) in the evaluation of a novel virtual coaching system based on the personalized clinical pathways and to present the results obtained from these preliminary activities. Specific activities involving end-users were planned along the development phases and are referred to as participatory design. The user experience of participatory design is constituted by the two different phases: the "end-user's perspective" phase where the user involvement in experiential activities is from an observational point of view, whereas the "field study" phase is the direct participation in these activities. Evaluation tools (i.e., scales, questionnaires, and interviews) were planned to assess different aspects of the system. Thirty patients [14 with poststroke condition and 16 with Parkinson's disease (PD)], 13 healthy elderly, and six health professionals were enrolled from two clinical centers during the two phases of participatory design. Results from "end-user's perspective" phase showed globally a positive preliminary perception of the service. Overall, a positive evaluation (i.e., UEQ median score > 1) was obtained for each domain of the scale in both groups of patients and healthy subjects. The evaluation of the vCare system during the "field study" phase was assessed as excellent (>80 points) from the point of view of both patients and health professionals. According to the majority of patients, the rehabilitation service through the solution was reported to be interesting, engaging, entertaining, challenging and useful for improving impaired motor functions, and making patients aware of their cognitive abilities. Once refined and fine-tuned in the aspects highlighted in the this work, the system will be clinically tested at user's home to measure the real impact of the rehabilitative coaching services.

Profiles of eHealth Adoption in Persons with Multiple Sclerosis and Their Caregivers.

(1) Background: Persons with multiple sclerosis (pwMS) are often characterized as ideal adopters of new digital healthcare trends, but it is worth thinking about whether and which pwMS will be targeted and served by a particular eHealth service like a patient portal. With our study, we wanted to explore needs and barriers for subgroups of pwMS and their caregivers when interacting with eHealth services in care and daily living. (2) Methods: This study comprises results from two surveys: one collecting data from pwMS and their relatives (as informal caregivers) and another one providing information on the opinions and attitudes of healthcare professionals (HCPs). Data were analyzed descriptively and via generalized linear models. (3) Results: 185 pwMS, 25 informal caregivers, and 24 HCPs in the field of MS participated. Nine out of ten pwMS used information technology on a daily base. Individual impairments like in vision and cognition resulted in individual needs like the desire to actively monitor their disease course or communicate with their physician in person. HCPs reported that a complete medication overview, additional medication information, overview of future visits and a reminder of medication intake would be very helpful eHealth features for pwMS, while they themselves preferred features organizing and enriching future visits. (4) Conclusions: A closer look at the various profiles of eHealth adoption in pwMS and their caregivers indicated that there is a broad and robust enthusiasm across several subgroups that does not exclude anyone in general, but constitutes specific areas of interest. For pwMS, the focus was on eHealth services that connect previously collected information and make them easily accessible and understandable.

Technically Representing Clinical Knowledge for Rehabilitation Care.

Providing a suitable rehabilitation after an acute episode or a chronic disease helps people to live independently and enhance their quality of life. However, the continuity of care is often interrupted in the transition from hospital to home. Virtual coaches (VCs) could help these patients to engage in personalized home rehabilitation programs. These coaching systems need also to be fed with procedural precepts in order to work as intended. This, in turn, relates both to properly represent the clinical knowledge (as the VC somehow replaces the formal caregivers that cannot be fully present) as well guide the patient correctly (in order to follow the medically desired procedures given the need for personalisation according to individual needs). Therefore, we outline our technical approach to deal with this. In particular, clinical pathways in terms of semi-formal procedure models in combination with machine learning components processing and powerful user interfaces providing these pathway information and feeding the VC are presented. The system is currently under testing in a participatory design phase called Living Lab. Thus, initial user feedback for further improvements is about to come.

Parkinson Network Eastern Saxony (PANOS): Reaching Consensus for a Regional Intersectoral Integrated Care Concept for Patients with Parkinson's Disease in the Region of Eastern Saxony, Germany.

As integrated care is recognized as crucial to meet the challenges of chronic conditions such as Parkinson's disease (PD), integrated care networks have emerged internationally and throughout Germany. One of these networks is the Parkinson Network Eastern Saxony (PANOS). PANOS aims to deliver timely and equal care to PD patients with a collaborative intersectoral structured care pathway. Additional components encompass personalized case management, an electronic health record, and communicative and educative measures. To reach an intersectoral consensus of the future collaboration in PANOS, a structured consensus process was conducted in three sequential workshops. Community-based physicians, PD specialists, therapists, scientists and representatives of regulatory authorities and statutory health insurances were asked to rate core pathway-elements and supporting technological, personal and communicative measures. For the majority of core elements/planned measures, a consensus was reached, defined as an agreement by >75% of participants. Additionally, six representatives from all partners involved in the network-design independently assessed PANOS based on the Development Model for Integrated Care (DMIC), a validated model addressing the comprehensiveness and maturity of integrated care concepts. The results show that PANOS is currently in an early maturation state but has the potential to comprehensively represent the DMIC if all planned activities are implemented successfully. Despite the favorable high level of consensus regarding the PANOS concept and despite its potential to become a balanced integrated care concept according to the DMIC, its full implementation remains a considerable challenge.

A Digital Patient Portal for Patients With Multiple Sclerosis.

Background: Multiple Sclerosis is a chronic inflammatory disease of the central nervous system that requires a complex, differential, and lifelong treatment strategy, which involves high monitoring efforts and the accumulation of numerous medical data. A fast and broad availability of care, as well as patient-relevant data and a stronger integration of patients and participating care providers into the complex treatment process is desirable. The aim of the ERDF-funded project "Integrated Care Portal Multiple Sclerosis" (IBMS) was to develop a pathway-based care model and a corresponding patient portal for MS patients and health care professionals (HCPs) as a digital tool to deliver the care model. Methods: The patient portal was created according to a patient-centered design approach which involves both the patients' and the professionals' view. Buurmann's five iterative phases were integrated into a design science research process. A problem analysis focusing on functions and user interfaces was conducted through surveys and workshops with MS patients and HCPs. Based on this, the patient portal was refined and a prototype of the portal was implemented using an agile software development strategy. Results: HCPs and patients already use digital hardware and are open to new technologies. Nevertheless, they desire improved (digital) communication and coordination between care providers. Both groups require a number of functions for the patient portal, which were implemented in the prototype. Usability tests with patients and HCPs are planned to consider whether the portal is deemed as usable, acceptable as well as functional to prepare for any needed ameliorations. Discussion: After testing the patient portal for usability, acceptability, and functionality, it will most likely be a useful and high-quality electronic health (eHealth) tool for patient management from day care to telerehabilitation. It implements clinical pathways in a manner which is comprehensible for patients. Future developments of the patient portal modules could include additional diseases, the integration of quality management and privacy management tools, and the use of artificial intelligence to personalize treatment strategies.

Defining and Delimitating Telemedicine and Related Terms - An Ontology-Based Classification.

The way health care is delivered changes continuously and is increasingly supported by digital technologies, such as telemedicine. Many terms in that context exist, which are not defined consistently and therefore used ambiguously. This makes it difficult to assess the evidence base. Ontologies bring structure and clarity to the discourse around telemedicine and related terms. We use this tool to provide definitions of relevant terms and show their interrelations. The results provided will be applied to different case studies to show their applicability. We aim to provide a more evidence-based understanding of relevant terms in digital health.

A Novel Virtual Coaching System Based on Personalized Clinical Pathways for Rehabilitation of Older Adults-Requirements and Implementation Plan of the vCare Project.

Home-based rehabilitation after an acute episode or following an exacerbation of a chronic disease is often problematic with a clear lack of continuity of care between hospital and home care. Secondary prevention is an essential element of long-term rehabilitation where strategies oriented toward risk reduction, treatment adherence, and optimization of quality of life need to be applied. Frail and sometimes isolated, the patient fails to adhere to the proposed post-discharge clinical pathway due to lack of appropriate clinical, emotional, and informational support. Providing a suitable rehabilitation after an acute episode or a chronic disease is a major issue, as it helps people to live independently and enhance their quality of life. However, as the rehabilitation period usually lasts some months, the continuity of care is often interrupted in the transition from hospital to home. Virtual coaches could help these patients to engage in a personalized rehabilitation program that complies with age-related conditions. These coaches could be a key technology for empowering patients toward increasing their adherence to the care plan and to improve their secondary prevention measures. In this paper, we are presenting a novel virtual coaching system that will address these challenges by combining recent technological advances with clinical pathways, based on joint research and validation activities from researchers from the medical and information and communication technology (ICT) domains.

Rehabilitation, the Great Absentee of Virtual Coaching in Medical Care: Scoping Review.

BACKGROUND: In the last few years, several studies have focused on describing and understanding how virtual coaches (ie, coaching program or smart device aiming to provide coaching support through a variety of application contexts) could be key drivers for health promotion in home care settings. As there has been enormous technological progress in the field of artificial intelligence and data processing in the past decade, the use of virtual coaches gains an augmented attention in the considerations of medical innovations. OBJECTIVE: This scoping review aimed at providing an overview of the applications of a virtual coach in the clinical field. In particular, the review focused on the papers that provide tangible information for coaching activities with an active implication for engaging and guiding patients who have an ongoing plan of care. METHODS: We aimed to investigate the use of the term virtual coach in the clinical field performing a methodical review of the relevant literature indexed on PubMed, Scopus, and Embase databases to find virtual coach papers focused on specific activities dealing with clinical or medical contexts, excluding those aimed at surgical settings or electronic learning purposes. RESULTS: After a careful revision of the inclusion and exclusion criteria, 46 records were selected for the full-text review. Most of the identified articles directly or indirectly addressed the topic of physical activity. Some papers were focused on the use of virtual coaching (VC) to manage overweight or nutritional issues. Other papers dealt with technological interfaces to facilitate interactions with patients suffering from different chronic clinical conditions such as heart failure, chronic obstructive pulmonary disease, depression, and chronic pain. CONCLUSIONS: Although physical activity is a healthy practice that is most encouraged by a virtual coach system, in the current scenario, rehabilitation is the great absentee. This paper gives an overview of the tangible applications of this tool in the medical field and may inspire new ideas for future research on VC.

Identifying Obstacles and Research Gaps of Telemedicine Projects: Approach for a State-of-the-Art Analysis.

This paper presents an approach for an evaluation of finished telemedicine projects using qualitative methods. Telemedicine applications are said to improve the performance of health care systems. While there are countless telemedicine projects, the vast majority never makes the threshold from testing to implementation and diffusion. Projects were collected from German project databases in the area of telemedicine following systematically developed criteria. In a testing phase, ten projects were subject to a qualitative content analysis to identify limitations, need for further research, and lessons learned. Using Mayring's method of inductive category development, six categories of possible future research were derived. Thus, the proposed method is an important contribution to diffusion and translation research regarding telemedicine, as it is applicable to a systematic research of databases.

CDA Templates - Utilizing the MediCUBE.

The specification and customization of clinical document types are tasks that need a strong collaboration between domain experts and IT specialists. However, these collaborators are often faced with difficulties due to different interpretation of domain knowledge. Therefore, an adequate method for sharing domain knowledge about documents is necessary. Even though there are some tools that help to define medical document types, there is a lack of approaches that focus on the understandability of the specification for the domain experts. This paper proposes a modeling approach based on the Clinical Document Architecture to address this gap.