Patient privacy and consent management in health

Alpay, Erdem
Health information of patients are preserved either in Electronic Health Records (EHR) repositories which are generally managed in national level or in local hospital systems. However, the real owners of the data are always the patients themselves, without depending where or by whom the data is preserved. Patients should have the rights to permit or deny the access of modification of their information to whoever they want. Here comes the concept of Consent. Consent means provision of approval or agreement, after thoughtful consideration. Decisions of patients about sharing their information are collected and preserved in consent documents. These consent documents can be stored in different formats. The eXtensible Access Control Markup Language (XACML) defines the policy language for this purpose. Also there is another language defined by XACML called Request/Response Language for creating request to access information and response to reply requests. Even though XACML is the most appropriate standard for conserving consent documents, it has some weak points when used in practical systems. In the first part of this study, a new model based on XACML is designed. This model is easily convertable to XACML and vice versa. Then a Consent Management tool is designed using the new model. This tool has two parts, Basic Consent Editor and Consent Manager. Basic Consent Editor is aiming to provide a practical user interface for creating and managing consent documents. Consent Manager on the other hand plays a decision mechanism role which handle requests and create decision responses according to already created consent documents. In this study, three different tools are implemented based on the Consent Management tool, each for different purposes on different projects. Throughout these implementations, usability and possible extensibility of Consent Management tool is analysed.


Attitudes and opinions of people who use medical services about privacy and confidentiality of health information in electronic environment
Özkan, Özlem; Arifoğlu, Ali; Saka, Osman; Department of Medical Informatics (2011)
In health services, it is a necessity to keep the records of the patients. Although paper-based records are commonly used for this aim, they are not as convenient as computerized records. Therefore, many of the health facilities have recently started keeping patients’ health records in electronic databases. However, new questions about confidentiality and privacy of these records were raised with this new system.This study aims to investigate the opinions and attitudes of the people who use the health servi...
Electronic Health Record standards - A brief overview
Eichelberg, M.; Aden, T.; Riesmeier, J.; Dogac, A.; Laleci Ertürkmen, Gökçe Banu (2006-12-12)
Most medical information systems store clinical information about patients in proprietary format.,, To address the resulting interoperability problems, several Electronic Health Record (EHR) standards that enable structured clinical content for the purpose of exchange are currently under development. In this article, we present a brief overview of the most relevant EHR standards, examine the level of hiteroperability they provide and assess their functionality in terms of content structure, access services,...
Evaluation of an electronic medical record system : Zonguldak Karaelmas University Hospital survey
Uğurbaş, Suat Hayri; Erdil, Erkan; Department of Science and Technology Policy Studies (2006)
The present study investigated the electronic medical record system (EMR) of Zonguldak Karaelmas University Hospital which is used for six years now. The advantages and disadvantages of an EMR system in comparison with paper medical records were evaluated based on the user’s opinion. The recommendations for the development of EMR and more efficient use of the system are principle goals of this study. The purposes of this thesis include promoting the implantation of EMR by introducing the advantages and disa...
An Extensible security infrastructure for the secondary use of electronic health records in clinical research
Eryılmaz, Elif; Toroslu, İsmail Hakkı; Doğaç, Asuman; Department of Computer Engineering (2013)
In order to facilitate clinical research studies re-using Electronic Health Records (EHR) has a great potential. Besides interoperability, safeguarding the security and privacy of the medical data in the context of secondary use for clinical research is one of the most important challenges in this respect. In order to ensure that the clinical information is shared among EHR systems and clinical research systems in an ethical and safe way, there needs to be standards-based and adaptable security and privacy ...
Evaluation and Analysis of Different Aggregation and Hyperparameter Selection Methods for Federated Brain Tumor Segmentation
Polat, Görkem; Işık Polat, Ece; Koçyiğit, Altan; Temizel, Alptekin (2021-9-27)
Availability of large, diverse, and multi-national datasets is crucial for the development of effective and clinically applicable AI systems in the medical imaging domain. However, forming a global model by bringing these datasets together at a central location, comes along with various data privacy and ownership problems. To alleviate these problems, several recent studies focus on the federated learning paradigm, a distributed learning approach for decentralized data. Federated learning leverages all the ...
Citation Formats
E. Alpay, “Patient privacy and consent management in health,” M.S. - Master of Science, Middle East Technical University, 2012.