Implementation of a hybrid healthcare model in rheumatic musculoskeletal diseases: 6-months results of the multicenter Digireuma study.

OBJECTIVES: Rheumatic and musculoskeletal diseases (RMDs) require a tailored follow-up that can be enhanced by the implementation of innovative tools. The Digireuma study aimed to test the feasibility of a hybrid follow-up utilizing an electronic patient reported outcomes (ePROs)-based monitoring strategy in patients with RMDs. METHODS: Adult patients with rheumatoid arthritis (RA) and spondyloarthritis (SpA) were recruited for a 6-month bicentric prospective follow-up consisting of face-to-face and digital assessments. Patients were asked to report disease-specific ePROs on a pre-established basis, and could also report flares, medication changes, and recent infections at any time. Four rheumatologists monitored these outcomes and contacted patients for interventions when deemed necessary. Results from face-to-face and digital assessments were described. RESULTS: Of 56 recruited patients, 47 (84%) submitted any ePROs to the digital platform. Most patients with RA were female (74%, median age of 47 years), while 48% of patients with SpA were female (median age 40.4 years). A total of 3,800 platform visits were completed, with a median of 57 and 29 visits in patients with RA and SpA, respectively. Among 52 reported alerts, 47 (90%) needed contact, of which 36 (77%) were managed remotely. Adherence rates declined throughout the study, with around half of patients dropping out during the 6 months follow-up. CONCLUSION: The implementation of a hybrid follow-up in clinical practice is feasible. Digital health solutions can provide granular knowledge of disease evolution and enable more informed clinical decision making, leading to improved patient outcomes. Further research is needed to identify target patient populations and engagement strategies.

Social media for health promotion in diabetes: study protocol for a participatory public health intervention design.

BACKGROUND: Participatory health approaches are increasingly drawing attention among the scientific community, and could be used for health promotion programmes on diabetes through social media. The main aim of this project is to research how to best use social media to promote healthy lifestyles with and within the Norwegian population. METHODS: The design of the health promotion intervention (HPI) will be participatory, and will involve both a panel of healthcare experts and social media users following the Norwegian Diabetes Association. The panel of experts will agree on the contents by following the Delphi method, and social media users will participate in the definition of the HPI by expressing their opinions through an adhoc online questionnaire. The agreed contents between both parties to be used in the HPI will be posted on three social media channels (Facebook, Twitter and Instagram) along 24 months. The 3 months before starting the HPI, and the 3 months after the HPI will be used as control data. The effect of the HPI will be assessed by comparing formats, frequency, and reactions to the published HPI messages, as well as comparing potential changes in five support-intended communication behaviours expressed on social media, and variations in sentiment analysis before vs during and after the HPI. The HPI's effect on social media users' health-related lifestyles, online health behaviours, and satisfaction with the intervention will be assessed every 6 months through online questionnaires. A separate questionnaire will be used to assess the panel of experts' satisfaction and perceptions of the benefits for health professionals of a HPI as this one. DISCUSSION: The time constraints of today's medical practice combined with the piling demand of chronic conditions such as diabetes make any additional request of extra time used by health care professionals a challenge. Social media channels provide efficient, ubiquitous and user-friendly platforms that can encourage participation, engagement and action necessary from both those who receive and provide care to make health promotion interventions successful.

A biopsy of Breast Cancer mobile applications: state of the practice review.

BACKGROUND: Breast cancer is the most common cancer in women. The use of mobile software applications for health and wellbeing promotion has grown exponentially in recent years. We systematically reviewed the breast cancer apps available in today's leading smartphone application stores and characterized them based on their features, evidence base and target audiences. METHODS: A cross-sectional study was performed to characterize breast cancer apps from the two major smartphone app stores (iOS and Android). Apps that matched the keywords "breast cancer" were identified and data was extracted using a structured form. Reviewers independently evaluated the eligibility and independently classified the apps. RESULTS: A total of 1473 apps were a match. After removing duplicates and applying the selection criteria only 599 apps remained. Inter-rater reliability was determined using Fleiss-Cohen's Kappa. The majority of apps were free 471 (78.63%). The most common type of application was Disease and Treatment information apps (29.22%), Disease Management (19.03%) and Awareness Raising apps (15.03%). Close to 1 out of 10 apps dealt with alternative or homeopathic medicine. The majority of the apps were intended for patients (75.79%). Only one quarter of all apps (24.54%) had a disclaimer about usage and less than one fifth (19.70%) mentioned references or source material. Gamification specialists determined that 19.36% contained gamification elements. CONCLUSIONS: This study analyzed a large number of breast cancer-focused apps available to consumers. There has been a steady increase of breast cancer apps over the years. The breast cancer app ecosystem largely consists of start-ups and entrepreneurs. Evidence base seems to be lacking in these apps and it would seem essential that expert medical personnel be involved in the creation of medical apps.

Secondary Use of Recorded or Self-expressed Personal Data: Consumer Health Informatics and Education in the Era of Social Media and Health Apps.

Objective: To summarize the state of the art during the year 2016 in the areas related to consumer health informatics and education with a special emphasis in secondary use of patient data. Methods: We conducted a systematic review of articles published in 2016, using PubMed with a predefined set of queries. We identified over 320 potential articles for review. Papers were considered according to their relevance for the topic of the section. Using consensus, we selected the 15 most representative papers, which were submitted to external reviewers for full review and scoring. Based on the scoring and quality criteria, five papers were finally selected as best papers Results: The five best papers can be grouped in two major areas: 1) methods and tools to identify and collect formal requirements for secondary use of data, and 2) innovative topics highlighting the interest of carrying on "secondary" studies on patient data, more specifically on the data self-expressed by patients through social media tools. Regarding the formal requirements about informed consent, the selected papers report a comparison of legal aspects in European countries to find a common and unified grammar around the concept of "data donation". Regarding innovative approaches to value patient data, the selected papers report machine learning algorithms to extract knowledge from patient experience and satisfaction with health care delivery, drug and medication use, treatment compliance and barriers during cancer disease, or acceptation of public health actions such as vaccination. Conclusions: Secondary use of patient data (apart from personal health care record data) can be expressed according to many ways. Requirements to allow this secondary use have to be harmonized between countries, and social media platforms can be efficiently used to explore and create knowledge on patient experience with health problems or activities. Machine learning algorithms can explore those massive amounts of data to support health care professionals, and institutions provide more accurate knowledge about use and usage, behaviour, sentiment, or satisfaction about health care delivery.

Método de valoración de aplicaciones móviles de salud en español: el índice iSYScore / Assessment method for mobile health applications in Spanish: the iSYScore index

La adopción generalizada de los teléfonos móviles inteligentes entre la población lleva consigo una creciente oferta de aplicaciones móviles de salud para dispositivos iOS y Android. El nivel de confianza que merecen dichas aplicaciones, así como la información sanitaria disponible en Internet dirigida a los ciudadanos, es un tema ampliamente debatido El objetivo principal de este trabajo fue desarrollar una herramienta -una escala- para evaluar la fiabilidad de las aplicaciones de salud. La escala fue desarrollada con un enfoque sistemático basado en la evidencia, y gracias al consenso de expertos, construida mediante un proceso Delphi. Seguidamente se desarrolló un catálogo de aplicaciones de salud, que fue utilizado para probar y validar nuestro método, que ayuda a recomendar las mejores aplicaciones para usuarios no sanitarios a través de 3 dimensiones diferentes: 1) popularidad e interés; 2) confianza y calidad, y 3) utilidad (AU)

The widespread of mobile smartphones among the population has resulted in a growing range of mobile applications in health using iOS and Android devices. The level of confidence that such applications deserve and the health information available online to the general population is a widely debated issue. The main objective of this work was to develop a tool -a scale-, for evaluating the reliability of health apps. The scale was developed using a systematic evidence-based approach, and with an expert consensus, built with a Delphi process. This was followed by a health app catalogue, which was used to test and validate our method that helps to recommend the best apps for non-medical experts across 3 different user interest axes: 1) popularity and interest; 2) trust and quality; and 3) usefulness (AU)

All that Glitters Is not Gold: Consumer Health Informatics and Education in the Era of Social Media and Health Apps. Findings from the Yearbook 2016 Section on Consumer Health Informatics.

OBJECTIVE: To summarize the state of the art published during the year 2015 in the areas related to consumer health informatics and education with a special emphasis on unintended consequences of applying mobile and social media technologies in that domain. METHODS: We conducted a systematic review of articles published in PubMed with a predefined set of queries, which lead to the selection of over 700 potential relevant articles. Section editors screened those papers on the title, abstract, and finally complete paper basis, taking into account the papers' relevance for the section topic. The 15 most representative papers were finally selected by consensus between the two section editors and submitted for full review and scoring to external reviewers and the yearbook editors. Based on the final scoring, section editors selected the best five papers. RESULTS: The five best papers can be grouped in two major areas: 1) Digital health literacy and 2) Quality and safety concerns. Regarding health literacy issues of patients with chronic conditions such as asthma, online interventions should rather focus on changing patient beliefs about the disease than on supporting them in the management of their pathology since personally controlled health management systems do not show expected benefits,. Nevertheless, encouraging and training chronic patients for an active online health information-seeking behaviour substantially decreases state anxiety level. Regarding safety and privacy issues, even recommended health-related apps available on mobile phones do not guarantee personal data protection. Furthermore, the analysis indicated that patients undergoing Internet interventions experienced at least one adverse event that might be related to treatment. At least, predictive factors have been identified in order to credit or not a health rumour. CONCLUSIONS: Trusting digital and connected health can be achieved if patients, health care professionals, and industrials build a shared model of health data management integrating ethics rules. Only increasing efforts in education with regards of digital health would help reach this goal., This would not resolve all frauds and security issues but at least improve their detection.

[Assessment method for mobile health applications in Spanish: The iSYScore index]. / Método de valoración de aplicaciones móviles de salud en español: el índice iSYScore.

The widespread of mobile smartphones among the population has resulted in a growing range of mobile applications in health using iOS and Android devices. The level of confidence that such applications deserve and the health information available online to the general population is a widely debated issue. The main objective of this work was to develop a tool -a scale-, for evaluating the reliability of health apps. The scale was developed using a systematic evidence-based approach, and with an expert consensus, built with a Delphi process. This was followed by a health app catalogue, which was used to test and validate our method that helps to recommend the best apps for non-medical experts across 3 different user interest axes: 1) popularity and interest; 2) trust and quality; and 3) usefulness.

Health Social Media and Patient-Centered Care: Buzz or Evidence? Findings from the Section "Education and Consumer Health Informatics" of the 2015 Edition of the IMIA Yearbook.

OBJECTIVE: To summarize the 2014 state of the art in the areas related to consumer health informatics and social media. METHODS: We conducted a systematic review of articles published in 2014 in PubMed with a predefined set of queries. We identified 439 articles relevant for the review. The two section editors independently screened those papers taking into account their relevance to the topics covered by the section. In a second step, they jointly selected the 20 most representative papers as candidate best papers. Candidate best papers were then submitted for full review and scoring by external reviewers. Based on the scoring, section editors together with the IMIA Yearbook editorial board selected the four best papers published in 2014 in consumer health informatics. RESULTS: Helping patients acquire a healthier lifestyle is a crucial part of patient empowerment. In this line of work, new studies are exploring the efficacy of online health interventions for patient behavioral change. The special case of smoking cessation for consumers with low socio-economic status is particularly noticeable. Another study has explored how an online intervention can reduce the anxiety of women who experience an abnormal mammography. The team of PatientsLikeMe has studied how online support groups could play a role in the quality of life of organ transplant recipients. The patient perspective of online forums' users is also analyzed in the domain of anticoagulation therapy. CONCLUSIONS: Online health interventions, many of them using social media, have confirmed their potential to impact consumer behavioral change. However, there are still many methodological issues that need to be addressed in order to prove cost-effectiveness.

Diavideos: a diabetes health video portal.

Diavideos is a web platform that collects trustworthy diabetes health videos from YouTube and offers them in a easy way. YouTube is a big repository of health videos, but good content is sometimes mixed with misleading and harmful videos such as promoting anorexia [1]. Diavideos is a web portal that provides easy access to a repository of trustworthy diabetes videos. This poster describes Diavideos and explains the crawling method used to retrieve these videos from trusted channels.

The role of taxonomies in social media and the semantic web for health education. A study of SNOMED CT terms in YouTube health video tags.

BACKGROUND: An increasing amount of health education resources for patients and professionals are distributed via social media channels. For example, thousands of health education videos are disseminated via YouTube. Often, tags are assigned by the disseminator. However, the lack of use of standardized terminologies in those tags and the presence of misleading videos make it particularly hard to retrieve relevant videos. OBJECTIVES: i) Identify the use of standardized medical thesauri (SNOMED CT) in YouTube Health videos tags from preselected YouTube Channels and demonstrate an information technology (IT) architecture for treating the tags of these health (video) resources. ii) Investigate the relative percentage of the tags used that relate to SNOMED CT terms. As such resources may play a key role in educating professionals and patients, the use of standardized vocabularies may facilitate the sharing of such resources. iii) Demonstrate how such resources may be properly exploited within the new generation of semantically enriched content or learning management systems that allow for knowledge expansion through the use of linked medical data and numerous literature resources also described through the same vocabularies. METHODS: We implemented a video portal integrating videos from 500 US Hospital channels. The portal integrated 4,307 YouTube videos regarding surgery as described by 64,367 tags. BioPortal REST services were used within our portal to match SNOMED CT terms with YouTube tags by both exact match and non-exact match. The whole architecture was complemented with a mechanism to enrich the retrieved video resources with other educational material residing in other repositories by following contemporary semantic web advances, in the form of Linked Open Data (LOD) principles. RESULTS: The average percentage of YouTube tags that were expressed using SNOMED CT terms was about 22.5%, while one third of YouTube tags per video contained a SNOMED CT term in a loose search; this analogy became one tenth in the case of exact match. Retrieved videos were then linked further to other resources by using LOD compliant systems. Such results were exemplified in the case of systems and technologies used in the mEducator EC funded project. CONCLUSION: YouTube Health videos can be searched for and retrieved using SNOMED CT terms with a high possibility of identifying health videos that users want based on their search criteria. Despite the fact that tagging of this information with SNOMED CT terms may vary, its availability and linked data capacity opens the door to new studies for personalized retrieval of content and linking with other knowledge through linked medical data and semantic advances in (learning) content management systems.

Inferring community structure in healthcare forums. An empirical study.

BACKGROUND: Detecting community structures in complex networks is a problem interesting to several domains. In healthcare, discovering communities may enhance the quality of web offerings for people with chronic diseases. Understanding the social dynamics and community attachments is key to predicting and influencing interaction and information flow to the right patients. OBJECTIVES: The goal of the study is to empirically assess the extent to which we can infer meaningful community structures from implicit networks of peer interaction in online healthcare forums. METHODS: We used datasets from five online diabetes forums to design networks based on peer-interactions. A quality function based on user interaction similarity was used to assess the quality of the discovered communities to complement existing homophily measures. RESULTS: Results show that we can infer meaningful communities by observing forum interactions. Closely similar users tended to co-appear in the top communities, suggesting the discovered communities are intuitive. The number of years since diagnosis was a significant factor for cohesiveness in some diabetes communities. CONCLUSION: Network analysis is a tool that can be useful in studying implicit networks that form in healthcare forums. Current analysis informs further work on predicting and influencing interaction, information flow and user interests that could be useful for personalizing medical social media.

Self-Tracking, Social Media and Personal Health Records for Patient Empowered Self-Care. Contribution of the IMIA Social Media Working Group.

OBJECTIVES: This paper explores the range of self-tracking devices and social media platforms used by the self-tracking community, and examines the implications of widespread adoption of these tools for scientific progress in health informatics. METHODS: A literature review was performed to investigate the use of social media and self-tracking technologies in the health sector. An environmental scan identified a range of products and services which were used to exemplify three levels of self-tracking: self-experimentation, social sharing of data and patient controlled electronic health records. RESULTS: There appears to be an increase in the use of self-tracking tools, particularly in the health and fitness sector, but also used in the management of chronic diseases. Evidence of efficacy and effectiveness is limited to date, primarily due to the health and fitness focus of current solutions as opposed to their use in disease management. CONCLUSIONS: Several key technologies are converging to produce a trend of increased personal health surveillance and monitoring, social connectedness and sharing, and integration of regional and national health information systems. These trends are enabling new applications of scientific techniques, from personal experimentation to e-epidemiology, as data gathered by individuals are aggregated and shared across increasingly connected healthcare networks. These trends also raise significant new ethical and scientific issues that will need to be addressed, both by health informatics researchers and the communities of self-trackers themselves.

The role of social media for patients and consumer health. Contribution of the IMIA Consumer Health Informatics Working Group.

OBJECTIVES: : To provide an overview on social media for consumers and patients in areas of health behaviours and outcomes. METHODS: A directed review of recent literature. RESULTS: : We discuss the limitations and challenges of social media, ranging from social network sites (SNSs), computer games, mobile applications, to online videos. An overview of current users of social media (Generation Y), and potential users (such as low socioeconomic status and the chronically ill populations) is also presented. Future directions in social media research are also discussed. CONCLUSIONS: : We encourage the health informatics community to consider the socioeconomic class, age, culture, and literacy level of their populations, and select an appropriate medium and platform when designing social networked interventions for health. Little is known about the impact of second-hand experiences faciliated by social media, nor the quality and safety of social networks on health. Methodologies and theories from human computer interaction, human factors engineering and psychology may help guide the challenges in designing and evaluating social networked interventions for health. Further, by analysing how people search and navigate social media for health purposes, infodemiology and infoveillance are promising areas of research that should provide valuable insights on present and emergening health behaviours on a population scale.

Respiration tracking using the Wii remote game controller.

Respiration exercises are an important part in the pulmonary rehabilitation of COPD (chronic obstructive pulmonary disease) patients. Furthermore, previous research has demonstrated that showing respiration pattern helps the patients to improve their breathing skills. We have developed a low cost and non-invasive prototype based on the Wii remote game controller infrared camera to provide BPM (breaths per minute) measurement as feedback. It can also be a comfortable solution without wires, batteries or any kind of electronics but just wearing passive markers. The lab evaluation with 7 healthy individuals showed that this approach is feasible when users are resting of their exercise. The BPM monitored during the tests presented less than 15% of maximum error and the RMSE (root mean square error) was lower than 6% in all the tests. Further research is needed to evaluate and adapt the system for COPD patients. In addition, more work is needed to develop applications that can be built to motivate and guide the users.

Healthy Gaming - Video Game Design to promote Health.

BACKGROUND: There is an increasing interest in health games including simulation tools, games for specific conditions, persuasive games to promote a healthy life style or exergames where physical exercise is used to control the game. OBJECTIVE: The objective of the article is to review current literature about available health games and the impact related to game design principles as well as some educational theory aspects. METHODS: Literature from the big databases and known sites with games for health has been searched to find articles about games for health purposes. The focus has been on educational games, persuasive games and exergames as well as articles describing game design principles. RESULTS: The medical objectives can either be a part of the game theme (intrinsic) or be totally dispatched (extrinsic), and particularly persuasive games seem to use extrinsic game design. Peer support is important, but there is only limited research on multiplayer health games. Evaluation of health games can be both medical and technical, and the focus will depend on the game purpose. CONCLUSION: There is still not enough evidence to conclude which design principles work for what purposes since most of the literature in health serious games does not specify design methodologies, but it seems that extrinsic methods work in persuasion. However, when designing health care games it is important to define both the target group and main objective, and then design a game accordingly using sound game design principles, but also utilizing design elements to enhance learning and persuasion. A collaboration with health professionals from an early design stage is necessary both to ensure that the content is valid and to have the game validated from a clinical viewpoint. Patients need to be involved, especially to improve usability. More research should be done on social aspects in health games, both related to learning and persuasion.