scholarly journals Data protection, information governance and the potential erosion of ethnographic methods in health care?

Author(s):  
Rebecca R. Lee ◽  
Janet E. McDonagh ◽  
Albert Farre ◽  
Sarah Peters ◽  
Lis Cordingley ◽  
...  
2020 ◽  
Vol 28 (3) ◽  
pp. 478-501
Author(s):  
Miranda Mourby

Abstract Data sharing has long been a cornerstone of healthcare and research and is only due to become more important with the rise of Big Data analytics and advanced therapies. Cell therapies, for example, rely not only on donated cells but also essentially on donated information to make them traceable. Despite the associated importance of concepts such as ‘donor anonymity’, the concept of anonymisation remains contentious. The Article 29 Working Party’s 2014 guidance on ‘Anonymisation Techniques’ has perhaps helped encourage a perception that anonymity is the result of data modification ‘techniques’, rather than a broader process involving management of information and context. In light of this enduring ambiguity, this article advocates a ‘relative’ understanding of anonymity and supports this interpretation with reference not only to the General Data Protection Regulation but also to European Union health-related legislation, which also alludes to the concept. Anonymity, I suggest, should be understood not as a ‘technique’ which removes the need for information governance but rather as a legal standard of reasonable risk-management, which can only be satisfied by effective data protection. As such, anonymity can be not so much an alternative to data protection as its mirror, requiring similar safeguards to maintain privacy and confidentiality.


2016 ◽  
Vol 23 (3) ◽  
pp. 627 ◽  
Author(s):  
Tom Chan ◽  
Concetta Tania Di Iorio ◽  
Simon De Lusignan ◽  
Daniel Lo Russo ◽  
Craig Kuziemsky ◽  
...  

Sharing health and social care data is essential to the delivery of high quality health care as well as disease surveillance, public health, and for conducting research. However, these societal benefits may be constrained by privacy and data protection principles. Hence, societies are striving to find a balance between the two competing public interests. Whilst the spread of IT advancements in recent decades has increased the demand for an increased privacy and data protection in many ways health is a special case.UK, are adopting guidelines, codes of conduct and regulatory instruments aimed to implement privacy principles into practical settings and enhance public trust. Accordingly, in 2015, the UK National Data Guardian (NDG) requested to conduct a further review of data protection, referred to as Caldicott 3.  The scope of this review is to strengthen data security standards and confidentiality. It also proposes a consent system based on an “opt-out” model rather than on “opt-in.Across Europe as well as internationally the privacy-health data sharing balance is not fixed.  In Europe enactment of the new EU Data Protection Regulation in 2016 constitute a major breakthrough, which is likely to have a profound effect on European countries and beyond.  In Australia and across North America different ways are being sought to balance out these twin requirements of a modern society - to preserve privacy alongside affording high quality health care for an ageing population.  Whilst in the UK privacy legal framework remains complex and fragmented into different layers of legislation, which may negatively impact on both the rights to privacy and health the UK is at the forefront in the uptake of international and EU privacy and data protection principles. And, if the privacy regime were reorganised in a more comprehensive manner, it could be used as a sound implementation model for other countries.


2002 ◽  
Vol 8 (6) ◽  
pp. 319-324 ◽  
Author(s):  
Pekka T Jaatinen ◽  
Jari Forsström ◽  
Pekka Loula

A literature survey was carried out to identify papers describing teleconsulting applications. From 1259 potentially relevant articles identified through Medline, 128 articles were selected for review. The majority of these had been published in the Journal of Telemedicine and Telecare (50 articles, or 39%). We analysed different user groups, equipment and implementation issues, and the type of connections. In 101 studies (79%) the teleconsultations were between doctors, in 11 they were between patient and doctor, in seven between patient and nurse, and in nine between nurse and doctor. Studies of consultations between patients and health-care professionals were thus quite rare. Surgery was the most common specialty in which teleconsultation was described. The teleconsultations were realtime or mainly realtime in 72% of articles. In 39% of studies the primary focus was on videoconferencing. The most common means of connection was by ISDN digital lines (38%). There were very few mentions of how to ensure data protection or to maintain patient confidentiality. We conclude that, for the majority of teleconsultation needs, asynchronous communication is the most flexible and cost-effective approach. Realtime videoconferencing can be justified only in particular circumstances.


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