PRECISION ALS—an integrated pan European patient data platform for ALS

Amyotrophic Lateral Sclerosis (ALS) is an incurable neurodegenerative condition. Despite significant advances in pre-clinical models that enhance understanding of disease pathobiology, translation of candidate drugs to effective human therapies has been disappointing. There is increasing recognition of the need for a precision medicine approach toward drug development, as many failures in translation can be attributed in part to disease heterogeneity in humans. PRECISION-ALS is an academic industry collaboration between clinicians, Computer Scientists, Information engineers, technologists, data scientists and industry partners that will address the key clinical, computational, data science and technology associated research questions to generate a sustainable precision medicine based approach toward new drug development. Using extant and prospectively collected population based clinical data across nine European sites, PRECISION-ALS provides a General Data Protection Regulation (GDPR) compliant framework that seamlessly collects, processes and analyses research-quality multimodal and multi-sourced clinical, patient and caregiver journey, digitally acquired data through remote monitoring, imaging, neuro-electric-signaling, genomic and biomarker datasets using machine learning and artificial intelligence. PRECISION-ALS represents a first-in-kind modular transferable pan-European ICT framework for ALS that can be easily adapted to other regions that face similar precision medicine related challenges in multimodal data collection and analysis

Towards knowledge sharing and patient privacy in a clinical decision support system

Patient records and their disease and treatment history can be scattered among healthcare providers. Sharing the knowledge effectively and, at the same time, respecting patient privacy is crucial in providing safe and accurate clinical decision support systems (CDSSs). In this paper we reflect upon our experience in the HealthAgents project wherein a prototype system was developed and a novel approach employed that supports data transfer and decision making in human brain tumour diagnosis. Here we examine the capability of the lightweight coordination calculus (LCC), a process calculus-based language, in combining together distributed healthcare services and meeting security challenges in pervasive settings. The result is that various clinical specialisms, being captured in representational abstractions and making contribution to patient diagnosis and management, retain their autonomy. However, at the same time, the behaviour of specialists in sharing clinical knowledge about their patients and providing clinical support is constrained by policies and rules in respect of their own clinical duties and responsibilities. Being introduced into the programme of the HRB Centre for Primary Care Research, this novel approach has the potential to help the provision of optimal solutions in data linkage and sharing across the primary and cecondary care interface. As added value, its application also advances the process of integrating clinical prediction rules and implementing CDSSs in practice and, ultimately, the improvement of quality of car

Developing an EHR for methadone treatment recording and decision support

In this paper, we give an overview of methadone treatment in Ireland and outline the rationale for designing an electronic healthcare record (EHR) with extensibility, interoperability and decision support functionality. Incorporating the open EHR standard, we designed a set of archetypes in line with the current best practice and clinical guidelines. They guide the information gathering process. A web-based data entry system has been implemented, incorporating elements of the paper-based prescription form, while at the same time facilitating the decision support function. The data collected via this Irish system can be aggregated into a larger dataset, if necessary, for analysis and evidence gathering, since we adopted the open EHR standard. It will be later extended to include the functionalities of prescribing drugs other than methadone during our work at the HRB Centre for Primary Care Research [1]