Exploiting Social Media for Active Pharmacovigilance: The PVClinical Social Media Workspace.

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.

Privacy-Preserving Partner Notification Service to Control Sexually Transmitted Infections.

Partner Notification (PN) processes are typically part of wider combination prevention efforts and focus on the notification of sexual partners to prevent Sexually Transmitted Infections (STIs), including Human Immunodeficiency Viruses and viral hepatitis. We present a free, voluntary, anonymous and GDPR-compliant Partner Notification service that offers enhanced security and privacy through a web and mobile application via a unique random codes.

A GDPR-Compliant Partner Notification Service.

Partner Notification processes focus on the notification of sexual partners to prevent the transmission of Sexually Transmitted Infections (STIs). The INTEGRATE Joint Action provides an integrated platform called RiskRadar, for combination prevention activities targeting STIs, including an anonymous, free and voluntary Partner Notification service. The presented service information flow ensures privacy, security and GDPR compliance which were identified as vital with similar tools. The service is available via web and mobile interfaces using a unique random code provided from authorised healthcare professionals to support privacy.

AquaScouts: ePROs Implemented as a Serious Game for Children With Cancer to Support Palliative Care.

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.

RiskRadar: development and pilot results of a technical intervention targeting combination prevention regarding HIV, viral hepatitis, sexually transmitted infections and tuberculosis.

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.

A Twitter discourse analysis of negative feelings and stigma related to NAFLD, NASH and obesity.

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.

Fostering Palliative Care Through Digital Intervention: A Platform for Adult Patients With Hematologic Malignancies.

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.

ICT Toolkit for Integrated Prevention, Testing and Linkage to Care Across HIV, Hepatitis, STIs and Tuberculosis in Europe.

Online digital tools are considered an innovative method to promote HIV, hepatitis and STIs prevention, testing and treatment services, overcoming individual and social barriers, especially for younger people and other, possibly hard-to-reach, target population groups. In this paper, we introduce INTEGRATE RiskRadar, a web and mobile application developed in the scope of the EU-supported INTEGRATE Joint Action (JA), that aims to enhance the integration of combination prevention, testing and linkage to care for HIV, hepatitis, STIs and tuberculosis by providing integrated information and digital tools regarding all four diseases to population groups at increased risk, aiming to eliminate the individual and social barriers to effective adoption of prevention practices, testing and linkage to care, and thus reduce the incidence and burden of these diseases in the European Region.

Citizen Perspectives on Cross-Border eHealth Data Exchange: A European Survey.

Efficient and secure cross-border eHealth data exchange has been recently identified by the European Commission as one of the top-three priorities for the digital transformation of health and care in the European Union. To this end, various organizational, legal, ethical, and technical challenges, related to citizens' privacy and health data security arise. This paper discusses an online survey that was conducted with the participation of European citizens, aiming to identify how they feel about exchanging their health data with healthcare professionals or eHealth service providers and to what extent they are aware of the privacy, legal, security, and technology acceptance issues (e.g. use of biometrics, mobile apps, etc.). The survey rationale, structure, and results are presented, while potential barriers and facilitators regarding cross-border health data exchange and the adoption of eHealth solutions at large are discussed.

Mining Social Media for Perceptions and Trends on HIV Pre-Exposure Prophylaxis.

Pre-Exposure Prophylaxis (PrEP) is an approach for preventing the human immunodeficiency virus (HIV), which entails the administration of antiretroviral medication to high-risk seronegative persons. If taken correctly, PrEP can reduce HIV infection risk by more than 90%. The aim of this study was to identify and examine PrEP-related perceptions and trends discussed on Twitter. Using open-source technologies, text-mining and interactive visualisation techniques, a comprehensive data gathering and analytics Web-based platform was developed to facilitate the study objectives. Our results demonstrate that monitoring of PrEP-related discussions on Twitter can be detected over time and valuable insights can be obtained concerning issues of PrEP awareness, expressed opinions, perceived barriers and key discussion points on its adoption. The proposed platform could support public-health professionals and policy makers in PrEP monitoring, facilitating informed decision making and strategy planning for efficient HIV combination prevention.