scholarly journals Security and Confidentiality Approach for the Clinical E-Science Framework (CLEF)

2005 ◽  
Vol 44 (02) ◽  
pp. 193-197 ◽  
Author(s):  
P. Singleton ◽  
J. Milan ◽  
J. MacKay ◽  
D. Detmer ◽  
A. Rector ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Data Protection ◽  
Health Record ◽  
Patient Privacy ◽  
Data Flows ◽  
Rich Information ◽  
Science Framework ◽  
Privacy And Confidentiality ◽  
Meet Data ◽  
Additional Monitoring

Summary Objectives: CLEF is an MRC sponsored project in the E-Science programme that aims to establish methodologies and a technical infrastructure for the next generation of integrated clinical and bioscience research. Methods: The heart of the CLEF approach to this challenge is to design and develop a pseudonymised repository of histories of cancer patients that can be accessed by researchers. Robust mechanisms and policies have been developed to ensure that patient privacy and confidentiality are preserved while delivering a repository of such medically rich information for the purposes of scientific research. Results: This paper summarises the overall approach adopted by CLEF to meet data protection requirements, including the data flows, pseudonymisation measures and additional monitoring policies that are currently being developed. Conclusion: Once evaluated, it is hoped that the CLEF approach can serve as a model for other distributed electronic health record repositories to be accessed for research.

scholarly journals Biobanks and GDPR: A Look at the Portuguese Panorama

2021 ◽  
pp. 345-362
Author(s):  
Carla Barbosa ◽  
Andreia da Costa Andrade
Keyword(s):  
Data Protection ◽  
Biological Samples ◽  
Health Research ◽  
Scientific Research ◽  
Research Activity ◽  
One Year ◽  
Privacy And Confidentiality ◽  
Associated Data ◽  
Scientific Research Activity ◽  
Special Protection

AbstractThe need for the existence of biobanks for health research purposes is something of which government authorities have been aware for several years. One year after the full entry into force of the GDPR, the Portuguese legislature has finally passed the law that ensures the full implementation of the data protection regime’s points left open by the European legislature. However, Portugal has also in place a range of legislation regulating the establishment and functioning of biobanks. The regulation of biobanks for research purposes imposes special protection duties on scientific research activity in which biological samples and associated data are used in order to guarantee protection of privacy and confidentiality.

scholarly journals External Validity of Electronic Health Record Studies of Cancer Patients

2017 ◽  
Vol 4 (3) ◽  
pp. 150
Author(s):  
Anqi Jin ◽  
Scarlett Gomez ◽  
Harold Luft ◽  
Daphne Lichtensztajn ◽  
Caroline Thompson
Keyword(s):  
Electronic Health Record ◽  
Cancer Patients ◽  
External Validity ◽  
Health Record ◽  
Electronic Health

Exploring adolescent and clinician perspectives on Australia’s national digital health record, My Health Record

2021 ◽  
Vol 27 (2) ◽  
pp. 102
Author(s):  
Laura Beaton ◽  
Ian Williams ◽  
Lena Sanci
Keyword(s):  
Health Care ◽  
Health Literacy ◽  
Access To Health Care ◽  
School Health ◽  
Digital Health ◽  
Well Being ◽  
Health Record ◽  
Patient Privacy ◽  
Privacy And Security ◽  
School Based

Adolescence is often a time when risk-taking behaviours emerge and attendance at primary health care is low. School-based health services can serve to improve access to health care. Clinicians play a key role in improving adolescents’ health literacy and capacity to make informed care decisions. Australia’s national digital health record, My Health Record (MHR), has posed significant challenges for both clinicians and adolescents in understanding impacts on patient privacy. Guidance is required on how best to communicate about MHR to adolescents. This exploratory qualitative study aims to examine adolescents’ understanding of MHR, clinicians’ knowledge of MHR and their use of MHR with adolescents. Focus groups with students, school health and well-being staff and semistructured interviews with GPs and nurses were undertaken in one regional and one urban secondary school-based health service in Victoria. Transcripts from audio recorded sessions were examined using thematic analysis. Resulting themes include minimal understanding and use of MHR, privacy and security concerns, possible benefits of MHR and convenience. The results suggest opportunities to address gaps in understanding and to learn from adolescents’ preferences for digital health literacy education. This will support primary care clinicians to provide best-practice health care for adolescents.

Privacy Considerations for Electronic Health Records

2012 ◽  
pp. 1387-1402
Author(s):  
Mary Kuehler ◽  
Nakeisha Schimke ◽  
John Hale
Keyword(s):  
Technology Policy ◽  
Medical Images ◽  
Medical Condition ◽  
Personal Health Record ◽  
Record Management ◽  
Health Record ◽  
Patient Privacy ◽  
Management Tools ◽  
Health Records ◽  
Electronic Health

Electronic Health Record (EHR) systems are a powerful tool for healthcare providers and patients. Both groups benefit from unified, easily accessible record management; however, EHR systems also bring new threats to patient privacy. The reach of electronic patient data extends far beyond the healthcare realm. Patients are managing their own health records through personal health record (PHR) service providers, and businesses outside of the healthcare industry are finding themselves increasingly linked to medical data. The Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule and other regulatory measures establish baseline standards for protecting patient privacy, but the inclusion of medical images in patient records presents unique challenges. Medical images often require specialized management tools, and some medical images may reveal a patient’s identity or medical condition through re-linkage or inherent identifiability. After exploring EHR systems in-depth and reviewing health information policy, the chapter explores how privacy challenges associated with EHR systems and medical images can be mitigated through the combined efforts of technology, policy, and legislation designed to reduce the risk of re-identification.

Article 30 Records of processing activities

2020 ◽  
Author(s):  
Waltraut Kotschy
Keyword(s):  
Impact Assessment ◽  
Data Protection ◽  
Personal Data ◽  
Data Flows ◽  
Right Of Access ◽  
Data Subject ◽  
General Conditions

Article 13 (Information to be provided where personal data are collected from the data subject); Article 14 (Information to be provided where personal data have not been obtained from the data subject); Article 15 (Right of access by the data subject); Article 24 (Responsibility of the controller); Article 32 (Security of processing); Article 35 (Data protection impact assessment); Article 37 (Designation of a data protection officer); Article 49 (Derogations for specific situations concerning transborder data flows); Article 83 (General conditions for imposing administrative fines)

Data Protection

2016 ◽  
Author(s):  
Jaani Riordan
Keyword(s):  
Data Protection ◽  
Personal Data ◽  
Almost All ◽  
Privacy And Confidentiality

This chapter examines the liability of internet intermediaries for contraventions of the data protection regime. Data protection duties, like those upholding rights of privacy and confidentiality, can impose significant burdens upon internet intermediaries. This is because much of the information in which these services deal will contain ‘personal data’, and in some cases sensitive personal data, while almost all of the activities undertaken by them will involve some form of ‘processing’ of those data.

scholarly journals Caregivers' role in using a personal electronic health record: a qualitative study of cancer patients and caregivers in Germany

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Aline Weis ◽  
Sabrina Pohlmann ◽  
Regina Poss-Doering ◽  
Beate Strauss ◽  
Charlotte Ullrich ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Electronic Health Record ◽  
Cancer Patients ◽  
Health Record ◽  
Electronic Health

Ethical Considerations in Cross-Linguistic Nursing

2009 ◽  
Vol 16 (6) ◽  
pp. 813-826 ◽  
Author(s):  
Franco A Carnevale ◽  
Bilkis Vissandjée ◽  
Amy Nyland ◽  
Ariane Vinet-Bonin
Keyword(s):  
Empirical Evidence ◽  
Nursing Care ◽  
Codes Of Ethics ◽  
Self Determination ◽  
Patient Privacy ◽  
Ethical Considerations ◽  
International Council ◽  
Linguistic Barriers ◽  
Ethical Norms ◽  
Privacy And Confidentiality

This article reviews empirical evidence and ethical norms in cross-linguistic nursing. Empirical evidence highlights that linguistic barriers between nurses and patients can perpetuate discrimination and compromise nursing care. There are significant organizational and relational challenges involved in ensuring adequate use of interpreters by nurses. Some evidence suggests that linguistic barriers are particularly problematic for nurses when compared with physicians. A comparative analysis of nursing ethical norms for cross-linguistic nursing was conducted using the codes of ethics of the American Nurses Association, the Canadian Nurses Association, and the International Council of Nurses. Five principal ethical norms for cross-linguistic nursing were identified: (1) respect for the patient as a unique person; (2) respect for the patient’s right to self-determination; (3) respect for patient privacy and confidentiality; (4) responsibility for one’s own competence, judgment, and action; and (5) responsibility to promote action better to meet the needs of patients, families, and groups.

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