The Health Informatics Working Group will undertake methodological and applied research to harness advanced health informatics and electronic health record (EHR) data to improve the design and conduct of trials, and develop capacity in this area. This use of health informatics will also be evaluated to identify the benefit, when compared to current non-EHR approaches. The Working Group will also consider regulatory impacts on the use of bioinformatics (e.g. the interaction of long term follow-up via medical records and the requirements for Information Governance Toolkit certification).
The Working Group aims to establish collaborations with the UK Health Informatics Research Network, and will continue to collaborate with the UKCRC Registered Clinical Trials Unit (CTU) Network; linking methodologists and practitioners to maximise impact.
Future research will examine the potential of EHR to;
We will develop the informatics understanding of how best to collect electronic Patient-Reported Outcomes (ePROs) in trials, both in clinical settings and remotely from patients’ homes via web based applications, mobile phones and tablet computers. We will document the added value of ePROs for clinical trials, working where appropriate with industry and regulatory authorities. Working with others, we will establish good practice for sharing of individual participant data from trials.
Working Group co-leads: Dr Elizabeth Williamson and Dr Duncan Appelbe.