Use of shared electronic health records opens a whole range of new possibilities for flexible and fruitful cooperation among health personnel in different health institutions, to the benefit of the patients. There are, however, unsolved legal and security challenges. The overall aim of this article is to highlight legal and security challenges that should be considered before using shared electronic cooperation platforms and health record systems to avoid legal and security "surprises" subsequent to the implementation. Practical lessons learned from the use of a web-based ulcer record system involving patients, community nurses, GPs, and hospital nurses and doctors in specialist health care are used to illustrate challenges we faced. Discussion of possible legal and security challenges is critical for successful implementation of shared electronic collaboration systems. Key challenges include (1) allocation of responsibility, (2) documentation routines, (3) and integrated or federated access control. We discuss and suggest how challenges of legal and security aspects can be handled. This discussion may be useful for both current and future users, as well as policy makers.
Patient self-management of disease is increasingly supported by technologies that can monitor a wide range of behavioural and biomedical parameters. Incorporated into everyday devices such as cell phones and clothes, these technologies become integral to the psychosocial aspects of everyday life. Many technologies are likely to be marketed directly to families with ill members, and families may enlist the support of clinicians in shaping use. Current ethical frameworks are mainly conceptualised from the perspective of caregivers, researchers, developers and regulators in order to ensure the ethics of their own practices. This paper focuses on families as autonomous decision-makers outside the regulated context of healthcare. We discuss some morally relevant issues facing families in their decisions to monitor the health-related behaviours of loved ones. An example - remote parental monitoring of adolescent blood glucose - is presented and discussed through the lens of two contrasting accounts of ethics; one reflecting the predominant focus on health outcomes within the health technology assessment (HTA) framework and the other that attends to the broader sociocultural contexts shaping technologies and their implications. Issues discussed include the focus of assessments, informed consent and child assent, and family co-creation of system characteristics and implications. The parents' decisions to remotely monitor their child has relational implications that are likely to influence conflict levels and thus also health outcomes. Current efforts to better integrate outcome assessments with social and ethical assessments are particularly relevant for informed decision-making about health monitoring technologies in families.
Personal Health Records (PHR) open new opportunities for enhancing delivery of standard health care services and health information to general population and supporting individuals to take more active role in health management and decision making processes. However, while utilization of PHR as part of a health management process brings much more flexibility, and advanced options to individuals, it also introduces questions related to responsibility and authority for creation, processing, maintenance and ensuring privacy and security of personal health related data. This paper summarizes the issues related to EU legal-regulatory requirements for developing PHR that enable storage, sharing and management of health data between different stakeholders (patient and healthcare institutions on different levels of care). We present a list of guidelines that outline which security and privacy issues must be taken into consideration and be addressed when developing PHR, and discuss them in the context of one European country (Norway). In the discussion we raise the issues that are not addressed in the existing regulations, but play an important role in developing secure PHR systems. We also propose a direction for further development of policies and legislations in Europe to facilitate further development and utilization of PHR systems.
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