Social Media for the Promotion of Holistic Self-Participatory Care: An Evidence Based Approach

Objectives: As health information is becoming increasingly accessible, social media offers ample opportunities to track, be informed, share and promote health. These authors explore how social media and holistic care may work together; more specifically however, our objective is to document, from different perspectives, how social networks have impacted, supported and helped sustain holistic self-participatory care. Methods: A literature review was performed to investigate the use of social media for promoting health in general and complementary alternative care in particular. We also explore a case study of an intervention for improving the health of Greek senior citizens through digital and other means. Results: The Health Belief Model provides a framework for assessing the benefits of social media interventions in promoting comprehensive participatory self-care. Some interventions are particularly effective when integrating social media with real-world encounters. Yet not all social media tools are evidence-based and efficacious. Interestingly, social media is also used to elicit patient ratings of treatments (e.g., for depression), often demonstrating the effectiveness of complementary treatments, such as yoga and mindfulness meditation. Conclusions: To facilitate the use of social media for the promotion of complementary alternative medicine through self-quantification, social connectedness and sharing of experiences, exploration of concrete and abstract ideas are presented herewithin. The main mechanisms by which social support may help improve health - emotional support, an ability to share experiences, and non-hierarchal roles, emphasizing reciprocity in giving and receiving support – are integral to social media and provide great hope for its effective us

Where can teens find health information? A survey of web portals designed for teen health information seekers

The Web is an important source for health information for most teens with access to the Web (Gray et al, 2005a; Kaiser, 2001). While teens are likely to turn to the Web for health information, research has indicated that their skills in locating, evaluating and using health information are weak (Hansen et al, 2003; Skinner et al, 2003, Gray et al, 2005b). This behaviour suggests that the targeted approach to finding health information that is offered by web portals would be useful to teens. A web portal is the entry point for information on the Web. It is the front end, and often the filter, that users must pass through in order to link to actual content. Unlike general search engines such as Google, content that is linked to a portal has usually been pre-selected and even created by the organization that hosts the portal, assuring some level of quality control. The underlying architecture of the portal is structured and thus offers an organized approach to exploring a specific health topic. This paper reports on an environmental scan of the Web, the purpose of which was to identify and describe portals to general health information, in English and French, designed specifically for teens. It answers two key questions. First of all, what portals exist? And secondly, what are their characteristics? The portals were analyzed through the lens of four attributes: Usability, interactivity, reliability and findability. Usability is a term that incorporates concepts of navigation, layout and design, clarity of concept and purpose, underlying architecture, in-site assistance and, for web content with text, readability. Interactivity relates to the type of interactions and level of engagement required by the user to access health information on a portal. Interaction can come in the form of a game, a quiz, a creative experience, or a communication tool such as an instant messaging board, a forum or blog. Reliability reflects the traditional values of accuracy, currency, credibility and bias, and in the web-based world, durabililty. Findability is simply the ease with which a portal can be discovered by a searcher using the search engine that is most commonly associated with the Web by young people - Google - and using terms related to teen health. Findability is an important consideration since the majority of teens begin their search for health information using search engines (CIBER, 2008; Hansen et al, 2003). The content linked to by the portals was not evaluated, nor was the portals’ efficacy as a health intervention. Teens looking for health information on the Web in English have a wide range of choices available but French-language portals are much rarer and harder to find. A majority of the portals found and reviewed originated from hospitals, associations specializing in a particular disease, and governmental agencies, suggesting that portals for teens on health related topics are generally reliable. However, only a handful of the portals reviewed were easy to find, suggesting that valuable resources for teens remain buried in the Web

Emerging Patient-Driven Health Care Models: An Examination of Health Social Networks, Consumer Personalized Medicine and Quantified Self-Tracking

A new class of patient-driven health care services is emerging to supplement and extend traditional health care delivery models and empower patient self-care. Patient-driven health care can be characterized as having an increased level of information flow, transparency, customization, collaboration and patient choice and responsibility-taking, as well as quantitative, predictive and preventive aspects. The potential exists to both improve traditional health care systems and expand the concept of health care though new services. This paper examines three categories of novel health services: health social networks, consumer personalized medicine and quantified self-tracking

Clinical Data from Home to Health Centre: the Telehealth Curation Lifecycle

This case study has been produced for the Digital Curation Centre (DCC) SCARP project, funded by the Joint Information Systems Committee (JISC) to investigate disciplinary attitudes and approaches to data deposit. The study looks at the data curation lifecycle in Telehealth research. Telehealth, or telecare, is an emerging sub-domain of eHealth, and the report profiles current practices in several telehealth pilot projects. Data curation is at an embryonic stage but can draw on related eHealth initiatives and clinical data management practices, and the report considers the infrastructure needed for data curation in this field of research and practice

Ontology-based Semantic Harmonization of HIV-associated Common Data Elements for Integration of Diverse HIV Research Datasets

Analysis of integrated, diverse, Human Immunodeficiency Virus (HIV)-associated datasets can increase knowledge and guide the development of novel and effective interventions for disease prevention and treatment by increasing breadth of variables and statistical power, particularly for sub-group analyses. This topic has been identified as a National Institutes of Health research priority, but few efforts have been made to integrate data across HIV studies. Our aims were to: 1) Characterize the semantic heterogeneity (SH) in the HIV research domain; 2) Identify HIV-associated common data elements (CDEs) in empirically generated and knowledge-based resources; 3) Create a formal representation of HIV-associated CDEs in the form of an HIV-associated Entities in Research Ontology (HERO); 4) Assess the feasibility of using HERO to semantically harmonize HIV research data. Our approach was guided by information/knowledge theory and the DIKW (Data Information Knowledge Wisdom) hierarchical model. Our systematized review of the literature revealed that synergistic use of both ontologies and CDEs included integration, interoperability, data exchange, and data standardization. Moreover, methods and tools included use of experts for CDE identification, the Unified Medical Language System, natural language processing, Extensible Markup Language, Health Level 7, and ontology development tools (e.g., Protégé). Additionally, evaluation methods included expert assessment, quantification of mapping tasks between raters, assessment of interrater reliability, and comparison to established standards. We used these findings to inform our process for achieving the study aims. For Aim 1, we analyzed eight disparate HIV-associated data dictionaries and developed a String Metric-assisted Assessment of Semantic Heterogeneity (SMASH) method, which aided identification of 127 (13%) homogeneous data element (DE) pairs and 1,048 (87%) semantically heterogeneous DE pairs. Most heterogeneous pairs (97%) were semantically-equivalent/syntactically-different, allowing us to determine that SH in the HIV research domain was high. To achieve Aim 2, we used Clinicaltrials.gov, Google Search, and text mining in R to identify HIV-associated CDEs in HIV journal articles, HIV-associated datasets, AIDSinfo HIV/AIDS Glossary, AIDSinfo Drug Database, Logical Observation Identifiers Names and Codes (LOINC), Systematized Nomenclature of Medicine (SNOMED), and RxNORM (understood as prescription normalization). Two HIV experts then manually reviewed DEs from the journal articles and data dictionaries to confirm DE commonality and resolved semantic discrepancies through discussion. Ultimately, we identified 2,179 unique CDEs. Of all CDEs, data-driven approaches identified 2,055 (94%) (999 from the HIV/AIDS Glossary, 398 from the Drug Database, 91 from journal articles, and a total of 567 from LOINC, SNOMED, and RxNorm cumulatively). Expert-based approaches identified 124 (6%) unique CDEs from data dictionaries and confirmed the 91 CDEs from journal articles. In Aim 3, we used the Protégé suite of ontology development tools and the 2,179 CDEs to develop the HERO. We modeled the ontology using the semantic structure of the Medical Entities Dictionary, available hierarchical information from the CDE knowledge resources, and expert knowledge. The ontology fulfilled most relevant criteria from Cimino’s desiderata and OntoClean ontology engineering principles, and it successfully answered eight competency questions. Finally, for Aim 4, we assessed the feasibility of using HERO to semantically harmonize and integrate the data dictionaries from two diverse HIV-associated datasets. Two HIV experts involved in the development of HERO independently assessed each data dictionary. Of the 367 DEs in data dictionary 1 (D1), 181 (49.32%) were identified as CDEs and 186 (50.68%) were not CDEs, and of the 72 DEs in data dictionary 2 (D2), 37 (51.39%) were CDEs and 35 (48.61%) were not CDEs. The HIV experts then traversed HERO’s hierarchy to map CDEs from D1 and D2 to CDEs in HERO. Of the 181 CDEs in D1, 156 (86.19%) were found in HERO, and 25 (13.81%) were not. Similarly, of the 37 CDEs in D2 32 (86.48%) were found in HERO, and 5 (13.51%) were not. Interrater reliability for CDE identification as measured by Cohen’s Kappa was 0.900 for D1 and 0.892 for D2. Cohen’s Kappas for CDEs in D1 and D2 that were also identified in HERO were 0.885 and 0.688, respectively. Subsequently, to demonstrate the integration of the two HIV-associated datasets, a sample of semantically harmonized CDEs in both datasets was categorically selected (e.g. administrative, demographic, and behavioral), and D2 sample size increases were calculated for race (e.g., White, African American/Black, Asian/Pacific Islander, Native American/Indian, and Hispanic/Latino) and for “intravenous drug use” from the integrated datasets. The average increase of D2 CDEs for six selected CDEs was 1,928%. Despite the limitation of HERO developers also serving as evaluators, the contributions of the study to the fields of informatics and HIV research were substantial. Confirmatory contributions include: identification of effective CDE/ontology tools, and use of data-driven and expert-based methods. Novel contributions include: development of SMASH and HERO; and new contributions include documenting that SH is high in HIV-associated datasets, identifying 2,179 HIV-associated CDEs, creating two additional classifications of SH, and showing that using HERO for semantic harmonization of HIV-associated data dictionaries is feasible. Our future work will build upon this research by expanding the numbers and types of datasets, refining our methods and tools, and conducting an external evaluation

fteval JOURNAL for Research and Technology Policy Evaluation (54). Special Issue: Participatory Evaluation and Impact Assessment in Citizen Science

Sonderausgabe zu partizipativen Methoden in der Evaluierung und Wirkungsmessung von Bürger:innenwissenschafte

DESIGN AND EXPLORATION OF NEW MODELS FOR SECURITY AND PRIVACY-SENSITIVE COLLABORATION SYSTEMS

Collaboration has been an area of interest in many domains including education, research, healthcare supply chain, Internet of things, and music etc. It enhances problem solving through expertise sharing, ideas sharing, learning and resource sharing, and improved decision making. To address the limitations in the existing literature, this dissertation presents a design science artifact and a conceptual model for collaborative environment. The first artifact is a blockchain based collaborative information exchange system that utilizes blockchain technology and semi-automated ontology mappings to enable secure and interoperable health information exchange among different health care institutions. The conceptual model proposed in this dissertation explores the factors that influences professionals continued use of video- conferencing applications. The conceptual model investigates the role the perceived risks and benefits play in influencing professionals’ attitude towards VC apps and consequently its active and automatic use