Giving patients granular control of personal health information: Using an ethics ‘Points to Consider’ to inform informatics system designers
International Journal of Medical InformaticsPublished 4 September 2013Open access
Eric M. Meslin, Sheri A. Alpert, Aaron E. Carroll, Jere D. Odell, William M. Tierney, Peter H. Schwartz
Citations38
SJR quartileQ1
SJR score1.19
SNIP1.55
Generate an AI Snapshot to get a quick, structured summary of this paper.
Study Snapshot
ObjectiveStudy objective
MethodsResearch methodology
PopulationPopulation studied
Sample sizeSample sizes
OutcomesStudy outcomes here
ResultsStudy results comes here
LimitationsResearch study limitations comes here
A concise AI-generated summary of the paper will appear here once you click Generate AI Snapshot.
TL;DR
The P2C was developed to guide informaticists who were designing a query tool in an existing EHR that would permit patient granular control and was intended to clarify what is at stake when designers try to accommodate potentially competing ethical commitments and logistical realities.
Abstract
The P2C is intended to clarify what is at stake when designers try to accommodate potentially competing ethical commitments and logistical realities. The P2C was developed to guide informaticists who were designing a query tool in an existing EHR that would permit patient granular control. While consideration of ethical issues is coming to the forefront of medical informatics design and development practices, more reflection is needed to facilitate optimal collaboration between designers and ethicists. This report contributes to that discussion.
Keywords
MedicineHealth Professions
JAMAFour Models of the Physician-Patient Relationship
2,405 Citations1992Ezekiel J. Emanuel
Four models of the doctor-patient interaction are outlined, emphasizing the different understandings of the goals of the physicianpatient interaction, the physician's obligations, the role of patient values, and the conception of patient autonomy, which constitute Weberian ideal types.
Journal of Legal MedicineA history and theory of informed consent
2,348 Citations1986Marshall B. Kapp
The LancetGlobal pattern of experienced and anticipated discrimination against people with schizophrenia: a cross-sectional survey
1,168 Citations2009Graham Thornicroft, Elaine Brohan +3 more
The nature, direction, and severity of anticipated and experienced discrimination reported by people with schizophrenia is described, which suggests measures such as disability discrimination laws might not be effective without interventions to improve self-esteem of people with mental illness.
DigitalGeorgetown (Georgetown University Library)The Imperative of Responsibility: In Search of an Ethics for the Technological Age
1,113 Citations1985Hans Jonas
Johns Hopkins University Press eBooksThe Silent World of Doctor and Patient
999 Citations2002Jay Katz
The once and future Silent World, by Alexander Morgan Capron, describes the struggle for freedom from Lay Control and the struggle over Rights and Capacities in a post-modern world.
BMC Health Services ResearchBarriers to the acceptance of electronic medical records by physicians from systematic review to taxonomy and interventions
863 Citations2010Albert Boonstra, Manda Broekhuis
The process of EMR implementation should be treated as a change project, and led by implementers or change managers, in medical practices, to develop some barrier-related interventions that could overcome the identified barriers.
New England Journal of MedicineStimulating the Adoption of Health Information Technology
730 Citations2009David Blumenthal
JAMAThe Silent World of Doctor and Patient
723 Citations1985Stanley Reiser
This thoughtful and important book takes us on a journey through medical and legal history to establish convincingly one point— thatmedical and legal relationships and entitlements up to the 20th century have developed in a manner that has kept patients out of the process of decision in which the harms and benefits of therapeutic alternatives concerning them were weighed and balanced.
Annals of Internal MedicinePhysician Recommendations and Patient Autonomy: Finding a Balance between Physician Power and Patient Choice
716 Citations1996Timothy E. Quill, Howard Brody
Patients faced with serious medical decisions are subject to being over- or under-influenced by physicians, and data from SUPPORT suggest that the dominant mode of decision making in acute care hospitals may still be the paternalism evidenced by Dr. Able.
JAMAThe Shared Decision-Making Continuum
442 Citations2010Alexander A. Kon
The model for shared decisionMaking described herein is consistent with ethical principles and patient preferences and can be referred to as the “shared decision-making continuum” because shared decision making will necessarily take different forms in different situations.
International Journal of Medical InformaticsThe Regenstrief Medical Record System: a quarter century experience
400 Citations1999Clement J. McDonald, J. Marc Overhage +19 more
The RMRS data model, file structures and architecture, as well as recent necessary changes to these are described as the authors coordinate a collaborative effort among all major Indianapolis hospital systems, improving patient care by capturing city-wide laboratory and encounter data.
Journal of Cleaner ProductionDoes intellectual capital promote the shift of healthcare organizations towards sustainable development? Evidence from Italy
367 Citations2006Caterina Cavicchi, Emidia Vagnoni
The results of the study indicate that physicians in general perceive benefits to information technology, but also cite major barriers to its implementation in their practices, and overcoming these barriers will require subsidies and performance incentives by payers and government.
Health AffairsThe Indiana Network For Patient Care: A Working Local Health Information Infrastructure
336 Citations2005Clement J. McDonald, J. Marc Overhage +5 more
The Indiana Network for Patient Care (INPC) is a local health information infrastructure (LHII) that includes information from the five major hospital systems, the county and state public health departments, and Indiana Medicaid and RxHub and that carries 660 million separate results.
Journal of the American Medical Informatics AssociationPatients want granular privacy control over health information in electronic medical records
290 Citations2012Kelly Caine, R. Hanania
To maintain the level of privacy afforded by medical records and to achieve alignment with patients' preferences, patients should have granular privacy control over information contained in their EMR.
Journal of the Islamic Medical Association of North AmericaPrinciples of Biomedical Ethics
280 Citations2012Shahid Athar
The principles of biomedical and Islamic medical ethics and an interfaith perspective on end-of-life issues and three cases to exemplify some of the conflicts in ethical decision-making are discussed.
International Journal of Medical InformaticsViews on health information sharing and privacy from primary care practices using electronic medical records
219 Citations2010Gihan Perera, Anne Holbrook +3 more
To determine how patients and physicians balance the perceived benefits and harms of sharing electronic health data for patient care and for secondary purposes, a before-after survey of patients and providers in practices using electronic medical records enrolled in a clinical trial in Ontario, Canada was conducted.
JAMAShared Medical Decision Making
189 Citations2004Robert Mcnutt
The argument for a change in the process of decision making is based on recognizing that the consequences of a patient’s choice cannot be shared with anyone else, and under the paradigm of informed choice, 2 questions can be asked: how do physicians inform patients about the consequences and how do patients use the information to make the choice?
Journal of the American Medical Informatics AssociationBiomedical data privacy: problems, perspectives, and recent advances
156 Citations2012Bradley Malin, Khaled El Emam +1 more
The arrival of ultra-cheap data collection and processing technologies is fundamentally changing the face of healthcare, with clinical and administrative health data being complemented with a range of *omics data, where genomics and proteomics are currently leading the charge.
JAMAFor the Patient's Good: The Restoration of Beneficence in Health Care
156 Citations1989Arthur L. Caplan
This book is the result of a collaborative effort between a renowned physician and a well-known bioethicist to show that bioethicists have gotten physicians hooked on the value of autonomy as the ethical be all and end all of physician-patient relationships.
JAMAAn Ethics Consultation Service in a Teaching Hospital
144 Citations1988John La Puma
It is concluded that ethics consultation performed by physician-ethicists provides useful, clinically acceptable assistance in a teaching hospital.
International Journal of Medical InformaticsInter-organizational future proof EHR systems
111 Citations2008Helma van der Linden, Dipak Kalra +2 more
To be able to fully address the privacy and security issues in interoperable EHRs and the long-life virtual EHR it is necessary to realize a paradigm shift from storing all incoming information in a local system to retrieving information from external systems whenever that information is deemed necessary for the care of the patient.
International Journal of ObesityWeighing the care: patients' perceptions of physician care as a function of gender and weight
106 Citations2003Michelle R. Hebl, Jun Xu +1 more
Based on patients' reports, this study reveals that physician care may not be as influenced by patient weight as previously thought, yet there is a discernable impact of patients' weight on physician behavior.
Techné Research in Philosophy and TechnologyPhilosophy and Design From Engineering to Architecture
105 Citations2009Deborah G. Johnson
PubMedPersonal health information management: consumers' perspectives.
95 Citations2006Andrea Civan, Meredith M. Skeels +2 more
This work identifies prominent PHIM activities such as monitoring and assessing health, as well as health-related decision making, planning, and action, and describes design principles the authors' participants used during the participatory design of a PHIM tool.
Philosophy and Design
84 Citations2007Peter Kroes, Pieter E. Vermaas +2 more
JAMAAn ethics consultation service in a teaching hospital. Utilization and evaluation
80 Citations1988John La Puma
The Journal of Medicine and Philosophy A Forum for Bioethics and Philosophy of MedicineWhy the Standard View is Standard: People, Not Machines, Understand Patients' Problems
74 Citations1990Randolph A. Miller
This commentary explains why the Standard View should remain standard and why recent progress in computer-based diagnosis has been encouraging enough to consider the concept of "human-assisted computer diagnosis".
Journal of General Internal MedicineThe Ethics of Information: Absolute Risk Reduction and Patient Understanding of Screening
40 Citations2008Peter H. Schwartz, Eric M. Meslin
A number of problems with the view that patients should routinely be told the specific magnitude and absolute probability of potential risks and benefits of screening tests have not been adequately addressed.
Ethics, Computing, and Medicine: Informatics and the Transformation of Health Care
38 Citations1997Kenneth W. Goodman
This book attempts to systematically identify and address the full range of ethical issues that arise when intelligent machines are used in medicine, nursing, psychology, and allied health professions.
PubMedEthics of implementing Electronic Health Records in developing countries: points to consider.
34 Citations2011Martin C. Were, Eric M. Meslin
This article takes a systematic approach guided by a widely accepted ethical framework currently in use for developing countries to first describe the ethical issues, and then proposes a set of 'Points to Consider' to guide further thinking and decision-making.
Public Health GenomicsFraming Genomics, Public Health Research and Policy: Points to Consider
33 Citations2010BM Knoppers, Thérèse Leroux +14 more
For each of these themes, a series of recommendations are proposed aiming to provide guidance on the role of the State in the use of genomic information for public health research, prevention and planning.
BMJSurvey of HIV patients' views on confidentiality and non-discrimination policies in general practice: Table 1
31 Citations1996Matthew Shaw, David R. Tomlinson +1 more
In Kensington, Chelsea, and Westminster in 1993-4, general practices knew of 761 HIV positive patients but 1186 HIV positive residents consulted HIV services, a discrepancy that hinders the establishment of a therapeutic relationship and prevents primary health care teams gaining experience.
International Journal of Medical InformaticsEmpowering citizens with access control mechanisms to their personal health resources
31 Citations2012Jorge Calvillo‐Arbizu, I. Román +1 more
The necessary access control infrastructure to support the Person-Oriented Virtual Organization (POVO) is studied and mechanisms based on semantic tools to assist the subject of care with the specification of access control policies are developed.
PubMedResearch ethics consultation: the Stanford experience.
27 Citations2009Mildred K. Cho, Sara L. Tobin +4 more
This research presents a meta-ethics framework for evaluating the role of emotion, self-consistency, and social reinforcement in the decision-making process in the context of regenerative medicine.
"The Recombinant DNA Controversy: A Memoir: Science, Politics, and the Public Interest 1974-1981" [Cover]
26 Citations2001Donald S. Fredrickson
Health informaticsEthics, Information Technology, and Public Health: Duties and Challenges in Computational Epidemiology
19 Citations2013Kenneth W. Goodman, Eric M. Meslin
It is necessary for public health practitioners to exercise “progressive caution” in applying information technology to the practice of public health, as developments such as bioinformatics pose acute challenges to maintaining privacy and confidentiality.
Deciding on Ethical Issues in Engineering Design
17 Citations2007Anke van Gorp, Ibo van de Poel
Cambridge University Press eBooksHealth care information: access, confidentiality, and good practice
14 Citations1997Sheri A. Alpert
This chapter reviews the foundations of a right to privacy and seeks out an ethical framework for viewing privacy and confidentiality claims; identifies special issues and problems in the context of health computing and networks; considers the sometimes conflicting interests of patients, providers, and third parties; and sketches solutions to some of the computer-mediated problems of patient and provider confidentiality.
Academic MedicineFaculty Ownership of Medical Facilities: Inappropriate Conflict or an Opportunity that Benefits Physicians and Patients?
5 Citations2004Rose Fife, Patricia Keener +3 more
A new policy was set forth in a Points to Consider document to meet the emerging needs of the school to deal with the issue of faculty ownership of medical facilities.
Health informaticsEthics, Information Technology, and Public Health: Duties and Challenges in Computational Epidemiology
5 Citations2003Kenneth W. Goodman
IUScholarWorks (Indiana University)Pandemic influenza preparedness: ethical issues and recommendations to the Indiana State Department of Health
5 Citations2008Eric M. Meslin, Jennifer M. Alyea +1 more
Cambridge Quarterly of Healthcare EthicsPrivacy Issues in Clinical Genomic Medicine, or Marcus Welby, M.D., Meets the $1000 Genome
2 Citations2008Sheri A. Alpert
This work states that discoveries are being made in laboratories that can help doctors determine from which drug a particular patient will receive the most efficacious treatment.