Speaker: Fiona Lugg-Widger
This is a talk at the International Clinical Trials Methodology Conference (ICTMC), Brighton, UK, 6th – 9th October 2019. Venue is the Hilton Brighton Metropole.
Parallel Session 10B – Using Electronic Health Records
Wednesday, Oct 9, 2019
10:35 AM – 11:40 AM
Dr Fiona Lugg-widger1, Mrs Lianna Angel1, Mr Peter Gee1, Dr Jeremy Segrott1, Prof Mike Robling1
1Cardiff University, United Kingdom
Introduction:The use of routinely held health, social care and other public health records has become an important feature of the research landscape and offers significant potential to advance knowledge across a wide range of clinical and public health domains. The involvement and engagement of this topic input with the public is key if we are to be successful in recruiting to studies using routine data/data linkage.
The aim of this work is to co-produce with members of the public an ‘animation package’ that researchers can use to increase public (including future trial participants) understanding of and engagement in research using routine data including aiding recruitment.
Methods: We have developed an animation by working with a group of young mothers and a group of 14-25 year olds in the South Wales area. The next step is to test and improve the animation through wider engagement with stakeholders including users of and receivers of the animation package. A number of stakeholder groups have been formed: 1) those who recruit participants; 2) Trial managers; 3) study lay representatives and 4) members of the public. They will provide input on their understanding of the key concepts described in the animation, its utility as a trial recruitment tool to enable informed consent when using routine data and the best format/media for its use over the long-term.
Timing of Results:The animation package will be finalised in Autumn 2019 and the feedback, utility and final product will be presented.
Relevance & Impact:The outputs from this work will be available and accessible for researchers to use as part of the information provided at study registration to facilitate recruitment when using routinely collected data and data linkage.