By Paul Graham, EPCC and Software Sustainability Institute.
We've been working with Professor Paul Burton and Dr Becca Wilson of the School of Social and Community Medicine, University of Bristol and their software DataSHIELD (Data Aggregation Through Anonymous Summary-statistics from Harmonized Individual levEL Databases). This is a suite of software that enables remote and non-disclosive analysis of sensitive research data. Data providers can use it to make their datasets available for use in analysis without disclosing individual level data itself, and researchers can thus gain access to the data without risk of disclosing participants. DataSHIELD is used principally in the biomedical field, but the technology used has universal application wherever sensitive individual level data needs to be protected, but also usefully analysed.
DataSHIELD provides a novel technological solution that can circumvent some of the most basic challenges in facilitating the access of researchers and other healthcare professionals to analysis of individual level data. There are a number of challenges to be overcome. Individual-level data is not allowed to be released. Many of the datasets are considered as intellectual property and this means they can be made available for analysis but cannot be physically shared with other organisations. Finally, the quantity of data can be problematic. Many of the datasets are image-based or involve genomic data (potentially millions of variables across thousands of individuals) so it is impractical to share them - analysis must be done in situ.
DataSHIELD is already successful and used in a variety of projects. The work with the Software Sustainability Institute is geared to ensure that this success grows in the future. This will be achieved via recommendations for improving the software auditing and collaboration processes, enhancing the governance of DataSHIELD, and seeking funding opportunities and paths to formal accreditation.
For more information about DataSHIELD, please visit their website.