PrecisionALS, an ambitious academic, clinical and industry research programme that will provide new insights into our understanding of Motor Neuron Disease, also known as Amyotrophic Lateral Sclerosis, hosted a workshop series dedicated to acquiring user requirements in relation to platform discovery. The workshops were held across three half-day sessions from the 18th to the 20th September 2023.
Led by Anthony Bolger and his skilled ICT team, along with lead clinicians expert in the disease, the workshops were broken down into the groups Data Processors, Data Monitors and Data Consumers to tackle the requirements from those users feeding into the system, checking the quality of the data held in the system and those utilising the data for research and discovery.
The first workshop, revolving around the Data Processors group, were primarily interested in increased automation; integration with existing systems (registries); prospective data collection, a web based interface; capacity for data monitoring/circulation for Quality Control checks; ease of connectivity with remote monitoring devices; and space for “using” rather than just storing data files. The primary objective of the workshop was to gain a comprehensive understanding of the datasets and their associated attributes, and how to streamline prospective data collection
Day two of the workshop focussed on Data Monitors and the system’s ability to check for systematic errors while ensuring data is uploading correctly before permanency. This includes raising queries and training the system to look at it before full automation; flagging warnings electronically; visualising real-time; cross encounter view (carry over/validation); and structures to prevent errors becoming a problem (proactive). Also to be included are metrics of success so that there are threshold levels to trigger a fix; exploratory ability where no coding skills are required to identify errors rapidly; and non-technical/non-clinical administrative patient level to oversee queries.
The last workshop focused on Data Consumers and saw consumers expressing a need for the ability to download remote monitoring derived data, run queries and manage hierarchical multiple entities across multiple encounters. Additional needs addressed functionality, including descriptive analysis and analytics; a visible workflow; accessing levels of exploration in the system versus outside of the system; a coding environment; a conversational/natural language feature; a notebook to feed back to GUI with pre-compiled data; to support formats such as csv/excel; flat files and simple formats that can transfer to statistical packages.
Frances Gibbons, Matthew Nicholson, Sinead Impey and the rest of the ICT team are now collating the fantastic engagement and feedback from the wider PALS group with a plan to follow-up with smaller focus groups over the coming weeks. The continued requirements gathering will detail the features that make up the overall database system.
Precision ALS partners include the ADAPT Centre, TRICALS, and FutureNEURO. Additional information on the project can be found on their website https://www.precisionals.ie/.
