Organising for Data Accessibility Standardising and Improving Access to Public Healthcare Data in Region Västra Götaland

Abstract

External healthcare data access is essential for improving healthcare qual- ity. It is provided to: researchers, public health organisations, and private organisations. However, there is a balance between data accessibility and patient integrity. Together with the Centre of Registries (RC) in Region Västra Götaland (VGR), data accessibility is investigated and given learnings that can be applied to improve processes and organisation. This thesis investigates and maps the current process for healthcare data withdrawal within VGR in order to deepen the knowledge of healthcare data accessibility and make recommendations from new learnings. The thesis work has used a qualitative approach where semi-structured interviews have been conducted with people with various backgrounds and hands-on experience in healthcare data accessibility. The collection of data and interviews were understood through relevant guidelines and thematic grouping. Parallel to the data analysis a rigorous literature review has been done to fit the research agenda and connect with the findings. The findings show aggregated themes and implications from the interviews that answer the setting of how data accessibility looks like today in VGR. Along with the theoretical framework the findings have been connected and discussed to understand learnings that could improve the current process. Firstly, streamlining the data withdrawal process and implementing a digital portal can improve efficiency. Secondly, ensuring patient integrity and data confidentiality through cross-scientific reviews is essential. Lastly, expanding beyond research can benefit other stakeholders. The thesis offers practical recommendations towards RC to help improve external data accessibility in VGR.