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.
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In living kidney donation, transplant professionals consider the rights of a living kidney donor and recipient to keep their personal health information confidential and the need to disclose this information to the other for informed consent. In incompatible kidney exchange, personal health information from multiple living donors and recipients may affect decision making and outcomes.
We conducted a survey to understand and compare the preferences of potential donors (n = 43), potential recipients (n = 73), and health professionals (n = 41) toward sharing personal health information (in total 157 individuals).
When considering traditional live-donor transplantation, donors and recipients generally agreed that a recipient's health information should be shared with the donor (86 and 80%, respectively) and that a donor's information should be shared with the recipient (97 and 89%, respectively). When considering incompatible kidney exchange, donors and recipients generally agreed that a recipient's information should be shared with all donors and recipients involved in the transplant (85 and 85%, respectively) and that a donor's information should also be shared with all involved (95 and 90%, respectively). These results were contrary to attitudes expressed by transplant professionals, who frequently disagreed about whether such information should be shared.
Future policies and practice could facilitate greater sharing of personal health information in living kidney donation. This requires a consideration of which information is relevant, how to put it in context, and a plan to obtain consent from all concerned.
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