Background People with non‐alcoholic fatty liver disease (NAFLD) and non‐alcoholic steatohepatitis (NASH) are stigmatized, partly since ‘non‐alcoholic’ is in the name, but also because of obesity, which is a common condition in this group. Stigma is pervasive in social media and can contribute to poorer health outcomes. We examine how stigma and negative feelings concerning NAFLD/NASH and obesity manifest on Twitter. Methods Using a self‐developed search terms index, we collected NAFLD/NASH tweets from May to October 2019 (Phase I). Because stigmatizing NAFLD/NASH tweets were limited, Phase II focused on obesity (November‐December 2019). Via sentiment analysis, >5000 tweets were annotated as positive, neutral or negative and used to train machine learning–based Natural Language Processing software, applied to 193 747 randomly sampled tweets. All tweets collected were analysed. Results In Phase I, 16 835 tweets for NAFLD and 2376 for NASH were retrieved. Of the annotated NAFLD/NASH tweets, 97/1130 (8.6%) and 63/535 (11.8%), respectively, related to obesity and 13/1130 (1.2%) and 5/535 (0.9%), to stigma; they primarily focused on scientific discourse and unverified information. Of the 193 747 non‐annotated obesity tweets (Phase II), the algorithm classified 40.0% as related to obesity, of which 85.2% were negative, 1.0% positive and 13.7% neutral. Conclusions NAFLD/NASH tweets mostly indicated an unmet information need and showed no clear signs of stigma. However, the negative content of obesity tweets was recurrent. As obesity‐related stigma is associated with reduced care engagement and lifestyle modification, the main NAFLD/NASH treatment, stigma‐reducing interventions in social media should be included in the liver health agenda.
MyPal is a European initiative focusing on the use of the electronic patient reported outcome (ePRO) measures to enhance patient engagement in palliative cancer care via digital self-reporting palliative care for patients with cancer. As a part of its approach, MyPal also focuses on pediatric patients, implementing a specific digital health platform including a serious game to facilitate the reporting of the symptoms and overall status regarding their quality of life (QoL). To this end, the reduction of psychological burden related to frequent reporting, a.k.a. as “reporting fatigue” has been identified as a priority. In this study, we present the MyPal-CHILD platform, emphasizing on the serious game named AquaScouts and its key design decisions, while also emphasizing on the respective challenges. More specifically, we provide insights on the participatory design approach applied during the design of the platform and the high-level goals defined based on end-user input. In addition, the validation process applied before the use of the platform under real-world conditions is also presented. Finally, we discuss a number of challenges and the prospects of deploying eHealth interventions to support palliative care.
The value of social media data for Adverse Drug Reaction (ADR) monitoring is actively investigated. While social media provide a vast amount of data, these data are hard to analyse due to their unstructured nature and lack of credibility. Despite these challenges, social media have been identified as a potentially useful data source, potentially able to “strengthen” the evidence for new ADRs. To this end, PVClinical project aims to build a platform facilitating the investigation of multiple heterogeneous data sources, including social media, to support pharmacovigilance (PV) processes, both in the clinical environment and beyond. In this study, we present the PVClinical Twitter workspace, also highlighting the rationale behind the main design choices, while also discussing the respective challenges.
Background The HIV pandemic impacts the lives of millions and despite the global coordinated response, innovative actions are still needed to end it. A major challenge is the added burden of coinfections such as viral hepatitis, tuberculosis and various sexually transmitted infections in terms of prevention, treatment and increased morbidity in individuals with HIV infection. A need for combination prevention strategies, tailored to high-risk key populations arises and technology-based interventions can be a valuable asset. The COVID-19 pandemic challenged the delivery of existing services and added stress to existing public health and clinical structures but also highlighted the potential of exploiting technical solutions for interventions regarding infectious diseases. In this paper we report the design process, results and evaluation findings from the pilots of ‘RiskRadar’—a web and mobile application aiming to support combination prevention, testing and linkage to care for HIV, viral hepatitis, various sexually transmitted infections and tuberculosis. Methods RiskRadar was developed for the INTEGRATE Joint Action’s aim to improve, adapt and pilot innovative digital tools for combination prevention. RiskRadar was designed iteratively using informed end-user-oriented approaches. Emphasis was placed on the Risk Calculator that enables users to assess their risk of exposure to one or more of the four disease areas, make informed decisions to seek testing or care and adjust their behaviours ultimately aiming to harm/risk reduction. RiskRadar has been piloted in three countries, namely Croatia, Italy and Lithuania. Results RiskRadar has been used 1347 times across all platforms so far. More than 90% of users have found RiskRadar useful and would use it again, especially the Risk Calculator component. Almost 49.25% are men and 29.85% are in the age group of 25–34. The application has scored 5.2/7 in the User Experience Questionnaire, where it is mainly described as “supportive” and “easy-to-use”. The qualitative evaluation of RiskRadar also yielded positive feedback. Conclusions Pilot results demonstrate above average satisfaction with RiskRadar and high user-reported usability scores, supporting the idea that technical interventions could significantly support combination prevention actions on Sexually Transmitted Infections.
Patient-reported outcomes (PROs) are an emerging paradigm in clinical research and healthcare, aiming to capture the patient's self-assessed health status in order to gauge efficacy of treatment from their perspective. As these patient-generated health data provide insights into the effects of healthcare processes in real-life settings beyond the clinical setting, they can also be viewed as a resolution beyond what can be gleaned directly by the clinician. To this end, patients are identified as a key stakeholder of the healthcare decision making process, instead of passively following their doctor's guidance. As this joint decision-making process requires constant and high-quality communication between the patient and his/her healthcare providers, novel methodologies and tools have been proposed to promote richer and preemptive communication to facilitate earlier recognition of potential complications. To this end, as PROs can be used to quantify the patient impact (especially important for chronic conditions such as cancer), they can play a prominent role in providing patient-centric care. In this paper, we introduce the MyPal platform that aims to support adults suffering from hematologic malignancies, focusing on the technical design and highlighting the respective challenges. MyPal is a Horizon 2020 European project aiming to support palliative care for cancer patients via the electronic PROs (ePROs) paradigm, building upon modern eHealth technologies. To this end, MyPal project evaluate the proposed eHealth intervention via clinical studies and assess its potential impact on the provided palliative care. More specifically, MyPal platform provides specialized applications supporting the regular answering of well-defined and standardized questionnaires, spontaneous symptoms reporting, educational material provision, notifications etc. The presented platform has been validated by end-users and is currently in the phase of pilot testing in a clinical study to evaluate its feasibility and its potential impact on the quality of life of palliative care patients with hematologic malignancies.
Objectives The objective of the paper is to present the outcomes of the HepHIV 2019 conference, held in Bucharest under the Romanian EU Presidency and focusing on challenges of timely and integrated testing and care. Methods The conference programme was put together by the organizing committee. It consisted of invited talks and peer‐reviewed abstracts. Results In all, 65 abstracts from 20 countries were presented during the conference, which had nearly 250 delegates, including high‐profile political representation. The conference highlighted the need to shift towards further disease integration because of the epidemiological characteristics of the hepatitis B (HBV), hepatitis C (HCV), HIV, sexually transmitted infection (STIs) and tuberculosis (TB) epidemics in the WHO European region. Integration should be a priority in the response to the epidemics to better reach key populations and to ensure better testing coverage. This relates to both the integration of services in shared care models and the integration of different settings and stakeholders in national strategies. Conclusions The conference demonstrated the need for greater political support for the policy changes required to implement integration. Testing normalization efforts are key to maximizing the impact of integration efforts. The conference call to action can help to guide developments in testing and linkage‐to‐care interventions across the European region.
In this study, the requirements elicitation approach employed in the context of the KONFIDO project is presented. KONFIDO introduces a technical paradigm for secure and interoperable cross-border health data exchange by leveraging novel approaches and cutting-edge technologies, such as homomorphic encryption and blockchains. Being a key part of the overall user requirements engineering methodology, requirements elicitation focused on producing high-level, end-user goals following a systematic procedure. First, the main business processes were identified based on the project's pilot scenarios. These business processes were the subject of a threat analysis, which identified the respective assets and a list of security risks/ threats. Threats were further elaborated, considering the outcome of relevant projects and applicable best practices/standards. As a result, a set of user goals were identified and analysed in detail. Finally, a meta-analysis of the produced goals against the employed information sources was applied, highlighting the importance of standards as a guide for defining requirements, as well as the complexity concerning the interdependencies among the elaborated business processes, assets, threats, and user goals. As the deployment of the technical solution may be cloud-based, implications and challenges imposed by the adoption of cloud computing in this setting are also presented.
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