Improving transparency of processes for accessing ICNARC data for research purposes

BackgroundThe Intensive Care National Audit Transparent application process and criteria (Standard 2); Consider target audience (Standard 4); and Transparency of data use and auditing (Standard 6). IntroductionOur primary objective was to improve our data application processes and our data use register. The purpose of this was to ensure transparency for those applying to use ICNARC data, to ensure both the process and the public benefit of use of our data can be understood by patients and the public, and to ensure the public have a mechanism to provide feedback. MethodsWe developed new and improved data access forms, along with supporting documents, guidance and tools for the website, ensuring these were clear and transparent for those applying to use ICNARC data. We consulted with patients and the public about the content they felt should be included, particularly within the updated data use register, and developed this with their input. The updated data use register supports regular updates and publishing of lay summaries, technical summaries, and public benefit statements. To make the process clearer, we worked with patients and the public to design an infographic to detail how ICNARC data are used. We also incorporated case studies of public benefit and a feedback form for members of the public. ResultsWe have used our website redevelopment as a platform to improve how we communicate our data services both to those applying to use ICNARC data, and to patients and the public. The new data services area of our website (https://icnarc.org/data-services/) ensures that it meets the Transparency Standards and has allowed us to communicate how ICNARC data are used in a clearer and more effective way. ConclusionsOur updated website has received positive feedback patients and the public. We anticipate the developments will continue to improve access to data and ensure transparency in the process and the use of ICNARC data.