Dataset Information

Patient Data Sharing and Confidentiality Practices of Researchers in Jordan.

ABSTRACT: Purpose:The main focus of this study is to assess the knowledge and practices of healthcare practitioners regarding data sharing, security, and confidentiality, with a focus on the use of health data retrieved from electronic health records (EHRs) for research purposes. Methods:A descriptive, cross-sectional, questionnaire-based survey study was conducted across all academic institutions including all researchers in the medical field in Jordan. Personal and administrative practices in data sharing were assessed through collecting data from respondents. Results:The response rate was 22% with an average of 10.25 years of experience in publications. Almost 60% had published at least 1 to 3 studies using EHRs. The prevalence of researchers who "Always" used antivirus software and preserved patient's information was 75.5% and 92.2%, respectively. However, other personal security and confidentiality measures were not satisfactory. Less than half of health data used in the research was "Always" anonymised or encrypted and only around 44.0% had "Always" used sensitive data with more specificity than normal data. Conclusion:Confidentiality and data sharing practices of healthcare practitioners and researchers were generally less than optimal. Efforts from healthcare providers, health institutions, and lawmakers should be put in place to protect the security and confidentiality of electronic patient data.

SUBMITTER: Karasneh RA

PROVIDER: S-EPMC6890205 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

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Patient Data Sharing and Confidentiality Practices of Researchers in Jordan.

Karasneh Reema A RA Al-Azzam Sayer I SI Alzoubi Karem H KH Hawamdeh Sahar S SS Muflih Suhaib M SM

Risk management and healthcare policy 20191129

<h4>Purpose</h4>The main focus of this study is to assess the knowledge and practices of healthcare practitioners regarding data sharing, security, and confidentiality, with a focus on the use of health data retrieved from electronic health records (EHRs) for research purposes.<h4>Methods</h4>A descriptive, cross-sectional, questionnaire-based survey study was conducted across all academic institutions including all researchers in the medical field in Jordan. Personal and administrative practice ...[more]

PMID: 31819686

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Project description:BackgroundIncreased application of electronic health information systems led to the buildup of patient information and facilitated access to this data. Consequently, the confidentiality of this information became an ethical challenge to medical teams' members including pharmacists. However, no study has been conducted to assess pharmacists' knowledge or practices of data confidentiality. Thus, the aim of this study was to assess the current practices and knowledge of pharmacists concerning data confidentiality.MethodsThis was a cross sectional study that included clinical pharmacists in tertiary hospitals and health care centers in Jordan. Data was collected through phone or face to face interviews using a data collection sheet. All continuous data was presented as median ± interquartile range (IQR) and categorical data as frequency (%). One way Chi square was used to check significant differences among categorical groups. Predictors that may affect knowledge and behavior scores were screened using simple linear regression.ResultsA total of 388 pharmacists were interviewed with a mean age of 39.59 ± 8.32 years, with an average experience of 12.55 ± 7.30 years. Pharmacists relied on their personal experience to resolve ethical dilemmas (n = 274, 70.3%), and when they seek advice, their work colleagues (n = 180, 46.4%) %), followed by the head of departments (144 n; 37.1%), were the main source of advice on ethical issues. The overall median knowledge score of pharmacists about data confidentiality was 2.0 out of 5.0 (IQR = 2.0). A considerable percentage of the pharmacists was willing to share information with family members without asking for permission from the patient (n = 98, 25.3%). Pharmacists had a median behavior score of 3.5 out of 4.0 (IQR = 0.4) regarding practices related to data confidentiality, where the majority of them handled medical information from the patient with great confidentiality (304 n, 78.4%), and 85.8% of them (n = 333) gave patient's sexual diseases-related medical information the highest confidentiality. However, based on univariate and multivariate linear regression analysis, none of the examined sociodemographic variables significantly predicted pharmacists' knowledge or behaviors (P > 0.05).ConclusionPharmacists are aware of the importance of confidentiality issues of their patients. However, a number of gaps in their knowledge and practices of data confidentiality were identified. Training that targets these gaps in their knowledge, and rectifies incorrect practices is needed during university education and as part of their continuous medical education.

Project description:BACKGROUND: Scientific research in the 21st century is more data intensive and collaborative than in the past. It is important to study the data practices of researchers--data accessibility, discovery, re-use, preservation and, particularly, data sharing. Data sharing is a valuable part of the scientific method allowing for verification of results and extending research from prior results. METHODOLOGY/PRINCIPAL FINDINGS: A total of 1329 scientists participated in this survey exploring current data sharing practices and perceptions of the barriers and enablers of data sharing. Scientists do not make their data electronically available to others for various reasons, including insufficient time and lack of funding. Most respondents are satisfied with their current processes for the initial and short-term parts of the data or research lifecycle (collecting their research data; searching for, describing or cataloging, analyzing, and short-term storage of their data) but are not satisfied with long-term data preservation. Many organizations do not provide support to their researchers for data management both in the short- and long-term. If certain conditions are met (such as formal citation and sharing reprints) respondents agree they are willing to share their data. There are also significant differences and approaches in data management practices based on primary funding agency, subject discipline, age, work focus, and world region. CONCLUSIONS/SIGNIFICANCE: Barriers to effective data sharing and preservation are deeply rooted in the practices and culture of the research process as well as the researchers themselves. New mandates for data management plans from NSF and other federal agencies and world-wide attention to the need to share and preserve data could lead to changes. Large scale programs, such as the NSF-sponsored DataNET (including projects like DataONE) will both bring attention and resources to the issue and make it easier for scientists to apply sound data management principles.

Dataset Information

Patient Data Sharing and Confidentiality Practices of Researchers in Jordan.

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Patient Data Sharing and Confidentiality Practices of Researchers in Jordan.

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