Ethical, legal and social issues for personal health records and applications

Abstract

Robert Wood Johnson Foundation's Project HealthDesign included funding of an ethical, legal and social issues (ELSI) team, to serve in an advisory capacity to the nine design projects. In that capacity, the authors had the opportunity to analyze the personal health record (PHR) and personal health application (PHA) implementations for recurring themes. PHRs and PHAs invert the long-standing paradigm of health care institutions as the authoritative data-holders and data-processors in the system. With PHRs and PHAs, the individual is the center of his or her own health data universe, a position that brings new benefits but also entails new responsibilities for patients and other parties in the health information infrastructure. Implications for law, policy and practice follow from this shift. This article summarizes the issues raised by the first phase of Project HealthDesign projects, categorizing them into four topics: privacy and confidentiality, data security, decision support, and HIPAA and related legal-regulatory requirements. Discussion and resolution of these issues will be critical to successful PHR/PHA implementations in the years to come.

Adoption of Electronic Personal Health Records in Canada: Perceptions of Stakeholders

“…36,37 Nevertheless, healthcare stakeholders have a great interest in the adoption and use of ePHRs, because of the potential benefits associated with them. [8][9][10][11][12][13]38 However, little is known about the current use and attitudes towards ePHRs in Canada and there is limited scientific evidence concerning their benefits and implications for healthcare systems. 8,9,39 In order to fill this gap, we conducted a study that explored stakeholders' perceptions of ePHRs and their views of barriers and facilitators to adoption in Canada.…”

Business models for telemedicine services: a literature review

“…While extensive research has been conducted with a focus on the clinical outcomes (Giordano et al, 2007;Nikus et al, 2009;Winkler et al, 2010;, Shacham et al, 2010), user adoption and attitudes (Roblin et al, 2009;George et al, 2012;Zanaboni and Wootton, 2012;), challenges or barriers to implementation, adoption and evaluation of telemedicine services (Gamble, 2009;Cushman et al, 2010;Wynia and Dunn, 2010;Weitzman et al, 2011) relatively fewer studies have described the underlying business models of such telemedicine services. The aim of this study is to explore and examine business models for the provision of telemedicine services in existing literature to help determine patterns in development of business models in telemedicine while uncovering gaps in research.…”

European views on patients directly obtaining their laboratory test results

“…There is a recognized need for interpretation of results to individualize results beyond the quality generic information available from an authoritative site, such as Lab Test on Line [11] and the majority of Laboratory Medicine Societies surveyed are supportive of an approach that enables better patient engagement and comprehension. If there are legal and ethical impediments [14,15], that is a matter for national governments; for EU countries health is a subsidiarity matter, though crossborder health policy initiatives would be facilitated with patient ownership of their record, including results [16]. Patients want to know about results [17].…”

“…Providing patients with access to their personal health record apart from creating a new health environment for the patient also brings responsibilities for them, particularly social, but also legal and ethical issues [14]. The obligations consequent on the digital revolution also has emotional impact, forcing the patient to confront their illness possibly in the absence of the emotional support, which used to be provided by face-to-face interaction, possibly over extended periods of time [22].…”