The anatomy of electronic patient record ethics: a framework to guide design, development, implementation, and use.

BACKGROUND: This manuscript presents a framework to guide the identification and assessment of ethical opportunities and challenges associated with electronic patient records (EPR). The framework is intended to support designers, software engineers, health service managers, and end-users to realise a responsible, robust and reliable EPR-enabled healthcare system that delivers safe, quality assured, value conscious care. METHODS: Development of the EPR applied ethics framework was preceded by a scoping review which mapped the literature related to the ethics of EPR technology. The underlying assumption behind the framework presented in this manuscript is that ethical values can inform all stages of the EPR-lifecycle from design, through development, implementation, and practical application. RESULTS: The framework is divided into two parts: context and core functions. The first part 'context' entails clarifying: the purpose(s) within which the EPR exists or will exist; the interested parties and their relationships; and the regulatory, codes of professional conduct and organisational policy frame of reference. Understanding the context is required before addressing the second part of the framework which focuses on EPR 'core functions' of data collection, data access, and digitally-enabled healthcare. CONCLUSIONS: The primary objective of the EPR Applied Ethics Framework is to help identify and create value and benefits rather than to merely prevent risks. It should therefore be used to steer an EPR project to success rather than be seen as a set of inhibitory rules. The framework is adaptable to a wide range of EPR categories and can cater for new and evolving EPR-enabled healthcare priorities. It is therefore an iterative tool that should be revisited as new EPR-related state-of-affairs, capabilities or activities emerge.

Examination and diagnosis of electronic patient records and their associated ethics: a scoping literature review.

BACKGROUND: Electronic patient record (EPR) technology is a key enabler for improvements to healthcare service and management. To ensure these improvements and the means to achieve them are socially and ethically desirable, careful consideration of the ethical implications of EPRs is indicated. The purpose of this scoping review was to map the literature related to the ethics of EPR technology. The literature review was conducted to catalogue the prevalent ethical terms, to describe the associated ethical challenges and opportunities, and to identify the actors involved. By doing so, it aimed to support the future development of ethics guidance in the EPR domain. METHODS: To identify journal articles debating the ethics of EPRs, Scopus, Web of Science, and PubMed academic databases were queried and yielded 123 eligible articles. The following inclusion criteria were applied: articles need to be in the English language; present normative arguments and not solely empirical research; include an abstract for software analysis; and discuss EPR technology. RESULTS: The medical specialty, type of information captured and stored in EPRs, their use and functionality varied widely across the included articles. Ethical terms extracted were categorised into clusters 'privacy', 'autonomy', 'risk/benefit', 'human relationships', and 'responsibility'. The literature shows that EPR-related ethical concerns can have both positive and negative implications, and that a wide variety of actors with rights and/or responsibilities regarding the safe and ethical adoption of the technology are involved. CONCLUSIONS: While there is considerable consensus in the literature regarding EPR-related ethical principles, some of the associated challenges and opportunities remain underdiscussed. For example, much of the debate is presented in a manner more in keeping with a traditional model of healthcare and fails to take account of the multidimensional ensemble of factors at play in the EPR era and the consequent need to redefine/modify ethical norms to align with a digitally-enabled health service. Similarly, the academic discussion focuses predominantly on bioethical values. However, approaches from digital ethics may also be helpful to identify and deliberate about current and emerging EPR-related ethical concerns.

The development of an epilepsy electronic patient portal: Facilitating both patient empowerment and remote clinician-patient interaction in a post-COVID-19 world.

OBJECTIVES: The current coronavirus disease 2019 (COVID-19) pandemic stresses an urgency to accelerate much-needed health service reform. Rapid and courageous changes being made to address the immediate impact of the pandemic are demonstrating that the means and technology to enable new models of health care exist. For example, innovations such as electronic patient portals (ePortal) can facilitate (a) radical reform of outpatient care; (b) cost containment in the economically constrained aftermath of the pandemic; (c) environmental sustainability by reduction of unnecessary journeys/transport. Herein, the development of Providing Individualised Services and Care in Epilepsy (PiSCES), an ePortal to the Irish National Epilepsy Electronic Patient Record, is demonstrated. This project, which pre-dates the COVID-19 crisis, aims to facilitate better patient- and family-centered epilepsy care. METHODS: A combination of ethnographic research, document analysis, and joint application design sessions was used to elicit PiSCES requirements. From these, a specification of desired modules of functionality was established and guided the software development. RESULTS: PiSCES functional features include "My Epilepsy Care Summary," "My Epilepsy Care Goals," "My Epilepsy Clinic Letters," "Help Us Measure Your Progress," "Prepare For Your Clinic Visit," "Information for Your Healthcare Provider." The system provides people with epilepsy access to, and engages them as co-authors of, their own medical record. It can promote improved patient-clinician partnerships and facilitate patient self-management. SIGNIFICANCE: In the aftermath of COVID-19, it is highly unlikely that the healthcare sector will return to a "business as usual" way of delivering services. The pandemic is expected to accelerate adoption of innovations like PiSCES. It is therefore a catalyst for change that will deliver care that is more responsive to individual patient needs and preferences.

The Convergence of Virtual Reality and Social Networks: Threats to Privacy and Autonomy.

The rapid evolution of information, communication and entertainment technologies will transform the lives of citizens and ultimately transform society. This paper focuses on ethical issues associated with the likely convergence of virtual realities (VR) and social networks (SNs), hereafter VRSNs. We examine a scenario in which a significant segment of the world's population has a presence in a VRSN. Given the pace of technological development and the popularity of these new forms of social interaction, this scenario is plausible. However, it brings with it ethical problems. Two central ethical issues are addressed: those of privacy and those of autonomy. VRSNs pose threats to both privacy and autonomy. The threats to privacy can be broadly categorized as threats to informational privacy, threats to physical privacy, and threats to associational privacy. Each of these threats is further subdivided. The threats to autonomy can be broadly categorized as threats to freedom, to knowledge and to authenticity. Again, these three threats are divided into subcategories. Having categorized the main threats posed by VRSNs, a number of recommendations are provided so that policy-makers, developers, and users can make the best possible use of VRSNs.

A review of contemporary work on the ethics of ambient assisted living technologies for people with dementia.

Ambient assisted living (AAL) technologies can provide assistance and support to persons with dementia. They might allow them the possibility of living at home for longer whilst maintaining their comfort and security as well as offering a way towards reducing the huge economic and personal costs forecast as the incidence of dementia increases worldwide over coming decades. However, the development, introduction and use of AAL technologies also trigger serious ethical issues. This paper is a systematic literature review of the on-going scholarly debate about these issues. More specifically, we look at the ethical issues involved in research and development, clinical experimentation, and clinical application of AAL technologies for people with dementia and related stakeholders. In the discussion we focus on: (1) the value of the goals of AAL technologies, (2) the special vulnerability of persons with dementia in their private homes, (3) the complex question of informed consent for the usage of AAL technologies.

Challenges and opportunities of lifelog technologies: a literature review and critical analysis.

In a lifelog, data from various sources are combined to form a record from which one can retrieve information about oneself and the environment in which one is situated. It could be considered similar to an automated biography. Lifelog technology is still at an early stage of development. However, the history of lifelogs so far shows a clear academic, corporate and governmental interest. Therefore, a thorough inquiry into the ethical aspects of lifelogs could prove beneficial to the responsible development of this field. This article maps the main ethically relevant challenges and opportunities associated with the further development of lifelog technologies as discussed in the scholarly literature. By identifying challenges and opportunities in the current debate, we were able to identify other challenges and opportunities left unmentioned. Some of these challenges are partly explained by a blind spot in the current debate. Whilst the current debate focuses mainly on lifelogs held by individuals, lifelogs held by governmental institutions and corporations pose idiosyncratic ethical concerns as well. We have provided a brief taxonomy of lifelog technology to show the variety in uses for lifelogs. In addition, we provided a general approach to alleviate the ethical challenges identified in the critical analysis.