A proposal for a set of attributes relevant for Web portal data quality: The Brazilian Rare Disease Network case

Abstract

Despite widespread growth in the use and complexity of web portals, insufficient attention is paid to their quality. Thus, this paper aims to describe the validation process of the Brazilian Network of Rare Diseases Portal and identify a set of data quality attributes required for psychometric evaluations that will support the portal implementation. This protocol describes a cross- sectional study of mixed nature divided into three steps: A usability evaluation, a Delphi consensus, and an electronic service quality assessment. Also, the RE-AIM model will be applied at various stages of evaluative research. We hope the improvement carried out during the validation of RARAS can contribute to the dissemination of knowledge in the area and include, based on scientific knowledge and clinical experts, offering clear, attractive, and accessible information for the population. A research gap exists in determining components of integrated e-service quality, usability, and user experience evaluation model in general, and for rare disease web portals, in particular. Users of the RARAS Portal need to get validated content and the required reliable online services without doing exhaustive searches or visiting multiple sources, with the main focus on e-service quality.