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.

Randomization of Clinical Trial Participants via an Integrated Web Service.

Randomization is an inherent part of Randomized Clinical Trials (RCTs), typically requiring the split of participants in intervention and control groups. We present a web service supporting randomized patient distribution, developed in the context of the MyPal project RCT. The randomization process is based on a block permutation approach to mitigate the risk of various kind of biases. The presented service can be used via its web user interface to produce randomized lists of patients distributed in the various study groups, with a variant block size. Alternatively, the presented service can be integrated as part of wider IT systems supporting clinical trials via a REST interface following a micro-service architectural pattern.

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.

Semantic biomedical resource discovery: a Natural Language Processing framework.

BACKGROUND: A plethora of publicly available biomedical resources do currently exist and are constantly increasing at a fast rate. In parallel, specialized repositories are been developed, indexing numerous clinical and biomedical tools. The main drawback of such repositories is the difficulty in locating appropriate resources for a clinical or biomedical decision task, especially for non-Information Technology expert users. In parallel, although NLP research in the clinical domain has been active since the 1960s, progress in the development of NLP applications has been slow and lags behind progress in the general NLP domain. The aim of the present study is to investigate the use of semantics for biomedical resources annotation with domain specific ontologies and exploit Natural Language Processing methods in empowering the non-Information Technology expert users to efficiently search for biomedical resources using natural language. METHODS: A Natural Language Processing engine which can "translate" free text into targeted queries, automatically transforming a clinical research question into a request description that contains only terms of ontologies, has been implemented. The implementation is based on information extraction techniques for text in natural language, guided by integrated ontologies. Furthermore, knowledge from robust text mining methods has been incorporated to map descriptions into suitable domain ontologies in order to ensure that the biomedical resources descriptions are domain oriented and enhance the accuracy of services discovery. The framework is freely available as a web application at ( http://calchas.ics.forth.gr/ ). RESULTS: For our experiments, a range of clinical questions were established based on descriptions of clinical trials from the ClinicalTrials.gov registry as well as recommendations from clinicians. Domain experts manually identified the available tools in a tools repository which are suitable for addressing the clinical questions at hand, either individually or as a set of tools forming a computational pipeline. The results were compared with those obtained from an automated discovery of candidate biomedical tools. For the evaluation of the results, precision and recall measurements were used. Our results indicate that the proposed framework has a high precision and low recall, implying that the system returns essentially more relevant results than irrelevant. CONCLUSIONS: There are adequate biomedical ontologies already available, sufficiency of existing NLP tools and quality of biomedical annotation systems for the implementation of a biomedical resources discovery framework, based on the semantic annotation of resources and the use on NLP techniques. The results of the present study demonstrate the clinical utility of the application of the proposed framework which aims to bridge the gap between clinical question in natural language and efficient dynamic biomedical resources discovery.

Ontology-driven monitoring of patient's vital signs enabling personalized medical detection and alert.

A major challenge related to caring for patients with chronic conditions is the early detection of exacerbations of the disease. Medical personnel should be contacted immediately in order to intervene in time before an acute state is reached, ensuring patient safety. This paper proposes an approach to an ambient intelligence (AmI) framework supporting real-time remote monitoring of patients diagnosed with congestive heart failure (CHF). Its novelty is the integration of: (i) personalized monitoring of the patients health status and risk stage; (ii) intelligent alerting of the dedicated physician through the construction of medical workflows on-the-fly; and (iii) dynamic adaptation of the vital signs' monitoring environment on any available device or smart phone located in close proximity to the physician depending on new medical measurements, additional disease specifications or the failure of the infrastructure. The intelligence lies in the adoption of semantics providing for a personalized and automated emergency alerting that smoothly interacts with the physician, regardless of his location, ensuring timely intervention during an emergency. It is evaluated on a medical emergency scenario, where in the case of exceeded patient thresholds, medical personnel are localized and contacted, presenting ad hoc information on the patient's condition on the most suited device within the physician's reach.

Scientific discovery workflows in bioinformatics: a scenario for the coupling of molecular regulatory pathways and gene-expression profiles.

Scientific workflow technologies and tools have become an important weapon in the arsenal of the bioinformaticians and computational biologists. To support this view we present a typical exploratory data analysis scenario involving the combination of information from Gene Regulatory Networks and gene expression data. We further describe the implementation of this scenario using the Workflow Environment implemented in the context of a large EU funded project. In this process desirable features that similar environments should offer are identified and analyzed. The ICT platform presented is evaluated using the chosen scenario as a benchmark. Finally we conclude with an outlook to future work.