Power of Population Data Science Webinar - Challenges in accessing routinely collected data from multiple providers in the UK for primary studies: Managing the morass
All sessions will be delivered live and online via the Gotowebinar system.
Can’t attend the live session? This presentation will be recorded and posted on the PopData's YouTube channel and the International Journal of Population Data Science (IJPDS) website for future reference. We recommend you register for the presentations of your choice so we can send you a link to the latest recorded sessions as they are available.
Researchers are increasingly using routinely collected data in addition to, or instead of, data collected using other methods. The UK government continues to invest in research centres to encourage use of these data, and trials and cohort studies utilise data linkage methods in the follow up of participants. However, such approaches may have their own limitations and challenges, such as data access delays.
This presentation will describe 5 domains of challenges that we and others have faced: Data application process, project timelines, consent considerations, information governance and contractual considerations. We will provide recommendations for each of these domains, both for researchers to action as well as areas where data providers can also input.
The talk should be of interest to researchers involved (or planning to be involved) in using and accessing routinely collected data in the UK as well as data providers and regulators.
Dr Fiona Lugg-Widger is a research fellow at the Centre for Trials Research (CTR), Cardiff University. She is the lead for routinely collected data and works on multiple studies all of which use routinely collected data from across the UK. As part of her role, she is also responsible for the governance required to hold and process routinely collected data. She is interested in improving the use of routinely collected data for research (in particular trials) including the acceptability of these methods to the public/participants.
Prof. Mike Robling is Director of Population Heath Trials in the Centre for Trials Research and the Centre's Directorial lead for routine data. He has had a long standing interest in the ethics and governance of routine data use in research. His research interests include the evaluation of complex public health interventions in a range of public sector settings.