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

AbstractRobert 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

Project HealthDesign: Rethinking the Power and Potential of Personal Health Records: Round One Final Report

Describes an initiative to develop prototypes for next-generation personal health record applications on a common platform focused on self-management for better health. Outlines grantees' prototypes for user-centered daily monitoring and lessons learned

Ethical issues of electronic patient data and informatics in clinical trial settings

The field of cancer bio-informatics unites the disciplines of scientific and clinical research withclinical practice and the treatment of individual patients. There is a need to study patients andsometimes their families, over many decades, to follow disease progress and long-term outcomes.This may require research teams to access the routinely-collected health data from generalpractice and hospital health records, prior to and after the cancer diagnosis is made. This clinicalinformation will increasingly include data provided by patients or acquired from them throughwearable devices that can monitor or deliver treatment, and data acquired from genetic relativesof the patient.All of these data, whether explicitly collected for the purpose of a clinical study, or routinelycollected as part of a patient?s life-time healthcare journey, are personal health data. There areethical and legal requirements to manage these data with care. This chapter explores the ethicalrequirements for collecting, holding, analysing and sharing personal health data, and thelegislation covering such activities

A Short Review of Ethical Challenges in Clinical Natural Language Processing

Clinical NLP has an immense potential in contributing to how clinical practice will be revolutionized by the advent of large scale processing of clinical records. However, this potential has remained largely untapped due to slow progress primarily caused by strict data access policies for researchers. In this paper, we discuss the concern for privacy and the measures it entails. We also suggest sources of less sensitive data. Finally, we draw attention to biases that can compromise the validity of empirical research and lead to socially harmful applications.Comment: First Workshop on Ethics in Natural Language Processing (EACL'17

Some ethical and legal considerations in the use of Web 2.0

This chapter explores ethical and legal issues that need to be considered by health information professionals when using Web 2.0 technologies. It reviews how the Internet and the Web have affected standards of professional behaviour, and highlights the problems that result when legal frameworks lag behind a rapidly developing technology. It discusses the need for appropriate forms of risk assessment with particular reference to issues of defamation, data protection, and intellectual property rights. A bibliography of further reading is appended

Privacy, Restriction, and Access: Legal and Ethical Dilemmas

This paper examines the intersection of privacy and access in archival repositories. Archival repositories are well known for containing restricted material, and for protecting the privacy of the donors. This literature review examines the need for restricted material from both legal and ethical standpoints, as well as discussing culturally sensitive materials while determining what archives and libraries can do to protect both themselves and their donors while enhancing accessibility and freedom of information