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.
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.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
customersupport@researchsolutions.com
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.