ENSURING ETHICS IN THE USE OF SENSITIVE DATABASES: A SCOPING REVIEW

Abstract

Despite the legal guidelines, it is necessary to detail the strategies used by controllers and operators of health databases, with a view to directing future studies and to inform institutions involved in the protection of research participants.  Objective: To identify the main problems for the protection of patient data and strategies to mitigate the problems pointed out, through a scoping review. Methods: In this study, the Joanna Briggs Institute (JBI) methodology for scoping reviews was followed. The PCC (Population, Concept and Context) strategy was used to formulate our research question: "How to conduct research in health databases, ensuring anonymity and attention to patients?" To identify relevant articles, the following search algorithm was applied: (research or "Research Ethics Committee") and (Ethics) and (technology or responsibility or security for "protecting information" or "Big Data" or "Patient Safety" or "Electronic patient record"). Original articles available in English, Portuguese and Spanish were selected from the Scielo, Pubmed and Scopus databases. The inclusion criteria were: articles that addressed problems and alternatives related to data security, in addition to explaining the origin of the research group. Individual searches were conducted, articles were selected, and agreement between reviewers was verified. The complete reading of the selected articles and the extraction of the data were done with the help of the Mendeley software and the Rayyan website. Results: A total of 947 articles were found. Of these, 88 were duplicates; The reviewers showed 86% (n=815) agreement between the articles that met the inclusion criteria, resulting in a total of 43 articles included. The 43 articles were read in full, in order to apply the exclusion criteria, resulting in the selection of 17 works. The prevalence of the problems identified was focused on the lack of a standardized system that can guarantee the confidentiality and reliability of the data collected. The alternatives to mitigate the problems identified showed prevalence in the implementation of specific legislation, for research involving the use of sensitive databases. Conclusion: The lack of standardized systems to ensure the reliability and confidentiality of the collected data was the main problem identified. As a mitigation strategy, the implementation of specific laws for research that uses sensitive databases was suggested.