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Reports/Papers/Presentations
History of the ELSI Working Group
A Brief History of the Ethical, Legal and Social Issues Working Group American Medical Informatics Association, 1996-2006
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Presentations at the AMIA Annual Symposia
AMIA 2002 -
Bio*Medical Informatics: One Discipline
Session 59
Panel: Ethics in Informatics Education
Authors Michael J. Hauan, MD, MPH, MTS, MA University of Missouri School of Medicine University of Missouri School of Medicine J.G. Anderson, PhD, Purdue University, West Lafayette, IN E.S. Berner, EdD, University of Alabama at Birmingham, Birmingham, AL W.B. Panko, PhD, University of Illinois at Chicago, Chicago, IL W.R. Hersh, MD, Oregon Health & Science University, Portland, OR
As the importance of informatics theory and practice increases in health care, so does the need for sound education in the ethics of informatics in health care. Therefore, curricula at various levels of training (e.g., medical or nursing school, residency, informatics degree programs and fellowships) should include treatment of the ethical issues in health informatics. This panel, sponsored by the Ethical, Legal, and Social Issues Working Group and the Education Working Group, will organize a discussion about ethics in informatics education by considering the following questions: · What topics should be included? · How and when should these issues best be taught within an informatics curriculum? · How suitable are new methodologies to addressing these kinds of issues? · What is the impact of teaching about ethical issues?
Session 72
Panel: Ethics and Bioinformatics
Authors: K.W. Goodman, PhD, University of Miami, Miami, FL, L. Dahm, JD, DDF&Associates, Houston, TX, P. Tarczy-Hornoch, MD, University of Washington, Seattle, WA, and P. Winkelstein, MD, State University of New York at Buffalo, Buffalo, NY.
A quarter-century of work identifying and addressing ethical issues in health informatics is undergoing a sea change. In much the way that genetics is trans-forming clinical practice and human subjects re-search, bioinformatics is forcing a reassessment of the role of intelligent machines in the collection, storage, analysis and transmission of genomic information. While the completion of the Human Genome Project raised a number of important ethical, legal and social issues, the layering of informatics atop this edifice adds an additional dimension of complexity. Some of the issues at the intersection of ethics, genomics and computing will be familiar to those who have followed developments in clinical informatics; indeed, there is a burgeoning literature examining ethical issues in clinical informatics. But other issues are somewhat more opaque and unfamiliar, and it will be the goal of this panel to help identify them and begin to offer an agenda for future research and other inquiry.
AMIA 2001 -
A Medical Informatics Odyssey: Visions of the Future and Lessons from the Past
Session 74
Panel: HIPAA - Is Government Regulation of Ethics Possible?
Authors: P. Winkelstein, MD, Children's Hospital of SUNY buffalo, Buffalo, NY, and K. Goodman, PhD, University of Miami, Miami, FL
The most ancient of rules in health care - protect privacy and confidentiality - has emerged as the most current of controversies. After years of planning and preparation, the first comprehensive, nationwide regulations to protect personal health data were introduced, only to be delayed, attacked and perhaps even abandoned. The regulations proposed under the Health Insurance Portability and Accountability Act (HIPAA) continue to elicit intense and important debate. This panel is proposed as a timely-indeed, as timely as it gets, given the uncertain status of the law-session to take stock, continue the debate and revisit the confidentiality in the first place.
Tutorial 24
Evidence, Error, and Uncertainty: Ethical and Social Challenges for Health Informatics
Authors: K.W. Goodman, PhD, University of Miami, Miami, FL
The growth of health informatics has been accompanied by a variety of exciting ethical issues. This tutorial, to be conducted as a seminar, will examine (1) Problems, including scientific uncertainty, associated with computerized outcome calculations and predictions, including the context of efforts to increase quality control, maximize cost effectiveness, and provide bases for comparing providers in managed competition. Note that the growth of evidence-based medicine presumes and relies on computers and electronic repositories for crafting practice guidelines and for making the results of biomedical research accessible to clinicians. The ethical issues that arise in evidence-based practice are overwhelmingly shaped by computational tools (e.g., how should clinicians weigh point-of-care practice guidelines against conflicting clinical judgments?). (2) The appropriate use of decision support systems and diagnostic expert systems. One of the most exciting difficulties at the intersection of ethics and informatics, i.e., the question of who is an appropriate user of a decision support system - and in what contexts - continues to challenge clinicians, researchers and ethicists; and (3) Maintenance of patient confidentiality when using health-record databases and networks. The tension between making personal health information easily accessible to those who need to know and difficult to access for those who do not, has grown ever more complex, especially given the fraught status of federal regulations under HIPAA. Now, under (proposed) nationwide privacy standards, it is crucial to understand the ethical underpinnings of privacy and confidentiality. This tutorial will thus underscore the ethical (and not regulatory or administrative) foundations of the proposed standards.
AMIA 2000 -
Converging Information, Technology, and Health Care
Tutorial 24
Evaluating the Impact of Health Care Information Systems
Instructors: J.G. Anderson, PhD, Purdue University, West Lafayette, IN, and C.E. Aydin, PhD, Cedars-Sinai Medical Center, Los Angeles, CA
Information systems are being marketed to health care organizations to provide management information, control costs, and to facilitate TQM and CQI programs. There is mounting evidence, however, that information systems affect the structure and functioning of organizations, the quality of work life of employees within them, and ultimately the costs and quality of the services they provide. Professionals who develop, implement, and evaluate clinical computer systems, however, frequently address only the technical aspects of these systems, while the success of implementation and utilization depends upon integration of the computer system into a complex organizational setting. Without an evaluation strategy that goes beyond the technical aspects of the system, an institution has no means of knowing how well it is actually functioning within the organization and no firm basis for developing specific interventions to enhance system success. Although implementation success depends heavily upon the integration of computer systems into a complex organizational setting, professionals who develop, implement, and evaluate health care computer systems have few guidelines for designing effective evaluation strategies and selecting appropriate methods to examine the outcomes of systems use in health care organizations. Evaluating the impact of computer-based medical information systems requires not only an understanding of computer technology, but also an understanding of the social and behavioral processes that affect and are affected by the introduction of the technology into the practice setting. This tutorial will outline ten questions that can be used as a framework for addressing information system impacts. Each question will be linked to models of change and appropriate evaluation methods. Case studies will be discussed that illustrate a number of these issues and evaluation methods.
Session 11
Panel: HIPAA Compliance: Ethical Foundations and Practical Strategies
Instructors: W.R. Braithewaite, MD, PhD, US Department HHS, Washington, DC, K.W. Goodman, PhD, University of Miami, Miami, FL, P.C. Tang, MD, Epic Research Institute, Mountain View, CA, and P. Winkelstein, MD, SUNY Buffalo, Buffalo, NY
The privacy, confidentiality and security regulations published under the Health Insurance Portability and Accountability Act (HIPAA) represent the first nationwide standards or rules for protecting personal health information. The regulations, crafted to apply to patient information that is stored or transmitted electronically, have already emerged as one of the most extensive attempts ever to do applied ethics in health care. This panel will review from a number of perspectives the ethical and, by extension, the practical implications of the HIPAA guidelines. Panelists will address the U.S. government's perspective, the positions of the American Medical Informatics Association, private industry and others, and the "view from the wards," or the hospital-based challenges that will arise as institutions move toward HIPAA compliance. Throughout, panelists will emphasize ethical and, where appropriate, legal underpinnings of these regulations. Issues to be discussed include patient access to and correction of records, penalties for abuses of patient information, the role of unique identifiers, and challenges to institutional review boards and those conducting outcomes and quality assessment research. The panel is crafted to allow ample time for audience participation.
Session 52
Panel: Preventing Medical Errors: Technical, Ethical, and Social Issues
Instructors: J.G. Anderson, PhD, Purdue University, West Lafayette, IN, E.A. Balas, MD, PhD, University of Missouri-Columbia, Columbia, MO, D.W. Bates, MD, G.J. Kuperman, MD, PhD, Partners HealthCare System, Chestnut Hill, MA, R.S.Evans, PhD, LDS Hospital, Salt Lake City, UT, and P. Winkelstein, MD, Children's Hospital of Buffalo, Buffalo, NY
According to the National Academy of Science's Institute of Medicine, between 44,000 and 98,000 Americans die each year because of medical errors. Medical errors may rank as the eighth leading cause of death. Properly designed clinical information systems have the potential to detect and to prevent medical errors. At the same time, clinical information systems that are not adequately designed, implemented, and evaluated have the potential to cause harm to patients. Thus, there is an ethical imperative to thoroughly evaluate clinical information systems.
Some of the issues that we plan to address include:
- What are the most effective ways of using information systems to prevent medical errors?
- How do the information technology and non-information technology aspects of error prevention fit together?
- Are there ways in which information systems may increase errors?
- Will efforts to prevent errors cause delays in the implementation of other medical information system applications?
- Will there be a trade-off between detecting and preventing errors and confidentiality?
- Will these efforts to prevent errors be used proactively to change behavior that results in errors or post hoc to assign blame and responsibility for errors and harm to patients?
- How do you evaluate the ability of information systems to prevent errors?
AMIA 1999 -
Cornerstones for a New Information Management Paradigm
Tutorial 32
Ethical and Social Challenges for Health Computing: Focus on Bioinformatics
Instructor: K.W. Goodman, PhD, University of Miami, Miami, FL
Health informatics continues to elicit and address exciting and interesting ethical issues. Most recently, these include challenges raised by bioinformatics, or the use of informatics tools to store, study, process and transmit genetic information. This tutorial will focus on ethical issues in informatics, emphasizing examples from bioinformatics. It will explore problems associated with computerized outcome calculations and predictions; the appropriate use of decision support and prognostic scoring systems; and maintenance of patient confidentiality. The emphasis on bioinformatics allows the tutorial to build on previous work in clinical computing, and thus to review standard approaches to ethics and informatics as well as the newer challenges posed by genomic computing. The tutorial is intended to encourage attendee discussion and debate. In addition to ethical and social issues, the tutorial will address public policy questions raised by bioinformatics, including data sharing by scientists and possible legislative and regulatory approaches.
The topics and issues covered will be organized around the following considerations:
- Decision making and uncertainty
- Error avoidance and responsibility
- Appropriate use of tools and applications
- Data security and confidentiality
- Standard of care
- Public policy
Upon completion of this tutorial, participants will be better able to:
- Identify leading ethical issues in health computing, including bioinformatics
- Identify and evaluate responsibilities for appropriate use of computers in health care
- Analyze practical ways of managing ethical problems in health informatics
Workshop 9
Consumers, Health Informatics, and the Media
Instructor: B.L. Chang, DNSc, University of California, Los Angeles, CA. K.W. Goodman, PhD, University of Miami, Miami, FL, J. Renner, MD, HealthSCout, Westport, CT, and S.J. Scolamiero, Harvard Medical School, Boston, MA.
For the first time in history, health care providers, consumers, and journalists have to deal with information overload. The potential for new informatics tools and media to influence health care decisions by consumers is unprecedented. The instructors in this workshop will discuss the effects of informatics developments on health care journalism, the emerging role of consumer-journalists, new and upcoming applications to help consumers and journalists cope with information overload, ethical implications of media participation in health care communication and decisions, and the role that AMIA could play to promote partnerships between consumer groups and media organizations.
Session 52
Panel: Consumer Participation in Informatics Research and Development: Ethical, Social, Methodological, and Political Challenges
Session Chair: A.R. Jadad, MD, Dphil, McMaster University, Ontario, Canada.
Participants: A.R. Jadad, MD, Dphil, McMaster University, Ontario, Canada, J.G. Anderson, Purdue University, West Lafayette, IN, M.G. Jones, H.Gyde, MBBS, Consumer Interest Research Institute, Washington, DC.
If we are to succeed in improving the health of the public through informatics, it is crucial that the needs of consumers be considered and met during the development and evalutation of new and existing tools. Achieving this will require important efforts to improve consumers' understanding of research in informatics; motivate developers to include consumers in their activities; and promote more active, efficient, and equitable participation of consumers in the research process, from the selection of research questions to the dissemination of results. Attendees will have the opportunity to listen to and exchange ideas with a multidisciplinary group of panelists regarding the opportunities and challenges of involving consumers in informatics research. The discussion will focus on the following aspects of consumer involvement in informatics research and development; how much we know; practical lessons from completed and ongoing efforts; consumers' views; ethical, social, methodological, and political challenges; international efforts and opportunities for collaboration with other countries; and the need for a clear agenda to promote meaningful and effective consumer participation.
AMIA 1998 -
A Paradigm Shift in Health Care Information Systems: Clinical Infrastructures for the 21st Century
Tutorial 14
Ethical and Social Challenges for Medical Informatics
Instructor: K.W. Goodman, PhD
Tutorial Syllabus (PDF)
The growth of health informatics has been accompanied by a variety of exciting ethical issues. This tutorial will examine problems, including scientific uncertainty, associated with computerized outcome calculations and predictions; efforts to increase quality control, maximize cost effectiveness, and provide bases for comparing providers in managed competition; the appropriate use of decision support systems and diagnostic expert systems; and maintenance of patient confidentiality when using health-record databases and networks. This tutorial will include new material on bioinformatics, telemedicine, and workplace issues.
Participants will be better able to:
- Identify leading ethical issues in health computing
- Identify and evaluate responsibilities for appropriate use of computers by physicians, nurses, administrators and others; and
- Analyze practical ways of managing ethical problems in medical informatics.
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