<p>Patient Data Sharing and Confidentiality Practices of Researchers in Jordan</p>

Abstract

PurposeThe 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.MethodsA 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.ResultsThe 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.ConclusionConfidentiality 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.

Physicians’ Knowledge, Perceptions, and Attitudes Related to Patient Confidentiality and Data Sharing

“…Other studies have suggested other practices that may lead to confidential data being leaked, including the failure to anonymize patient data and data storage on unprotected spaces, such as personal e-mails, personal laptops, and USB flash drives. 23 A recent study reported the use of USB flash drives by 274 nurses (34.3%) and e-mail by 127 nurses (21%) for the storage of patient data. 24 Meanwhile, only 17% of the physicians in our study reported that they always or sometimes used a USB flash drive or online spaces to store patient data.…”

Graduate students reported practices regarding the issue of informed consent and maintaining of data confidentiality in a developing country

“…Moreover, the same study highlighted the need for training of IRB members on ethics regulations, including declaration of any conflict of interest with the investigators [ 23 ]. Among other important practices that should be ensured by the IRB are the informed consent process, and maintaining of data privacy and confidentiality [ 24 , 25 , 26 ].…”

“…In addition, potential human research participants appreciated the challenges associated with multiple uses of their biological specimens and agreed to the possibility of sharing and utilizing samples for further research [ 25 ]. Another study showed that confidentiality and data sharing practices among healthcare practitioners and researchers in Jordan were generally less than optimal [ 26 ]. For example, it has been reported that less than half of health data used in the research was not always anonymized or encrypted [ 26 ].…”

“…Another study showed that confidentiality and data sharing practices among healthcare practitioners and researchers in Jordan were generally less than optimal [ 26 ]. For example, it has been reported that less than half of health data used in the research was not always anonymized or encrypted [ 26 ]. In addition, in a study of informed consent forms of studies related to the field of genetics from Jordan, results showed inadequacy in the information provided in informed consent forms, and among the top missing items was a statement ensuring data confidentiality [ 24 ].…”

“…Further work is needed to assess this point. Moreover, the current results showed that those in health-related fields specialty were significantly associated with more appropriate research practices in relation to informed consent and data confidentiality [ 24 , 26 ]. This could be related to the types of projects covered within the scope of health sciences that are more likely to involve human subjects, where data confidentiality issues are more prominent.…”