scholarly journals Patients’ moral attitudes toward electronic health records: Survey study with vignettes and statements

2021 ◽  
Vol 27 (1) ◽  
pp. 146045822098003
Author(s):  
Tania Moerenhout ◽  
Ignaas Devisch ◽  
Laetitia Cooreman ◽  
Jodie Bernaerdt ◽  
An De Sutter ◽  
...  
Keyword(s):  
Electronic Health Records ◽  
De Novo ◽  
Information Access ◽  
Survey Study ◽  
Sensitive Information ◽  
Patient Portal ◽  
Care Providers ◽  
Health Records ◽  
Electronic Health ◽  
Moral Attitudes

Patient access to electronic health records gives rise to ethical questions related to the patient-doctor-computer relationship. Our study aims to examine patients’ moral attitudes toward a shared EHR, with a focus on autonomy, information access, and responsibility. A de novo self-administered questionnaire containing three vignettes and 15 statements was distributed among patients in four different settings. A total of 1688 valid questionnaires were collected. Patients’ mean age was 51 years, 61% was female, 50% had a higher degree (college or university), and almost 50% suffered from a chronic illness. Respondents were hesitant to hide sensitive information electronically from their care providers. They also strongly believed hiding information could negatively affect the quality of care provided. Participants preferred to be informed about negative test results in a face-to-face conversation, or would have every patient decide individually how they want to receive results. Patients generally had little experience using patient portal systems and expressed a need for more information on EHRs in this survey. They tended to be hesitant to take up control over their medical data in the EHR and deemed patients share a responsibility for the accuracy of information in their record.

scholarly journals Facilitating the ethical use of health data for the benefit of society: electronic health records, consent and the duty of easy rescue

2016 ◽  
Vol 374 (2083) ◽  
pp. 20160130 ◽  
Author(s):  
Sebastian Porsdam Mann ◽  
Julian Savulescu ◽  
Barbara J. Sahakian
Keyword(s):  
Informed Consent ◽  
Electronic Health Records ◽  
Data Science ◽  
Real Life ◽  
Health Data ◽  
Sensitive Information ◽  
Minimal Risk ◽  
Sensitive Data ◽  
Health Records ◽  
Electronic Health

Advances in data science allow for sophisticated analysis of increasingly large datasets. In the medical context, large volumes of data collected for healthcare purposes are contained in electronic health records (EHRs). The real-life character and sheer amount of data contained in them make EHRs an attractive resource for public health and biomedical research. However, medical records contain sensitive information that could be misused by third parties. Medical confidentiality and respect for patients' privacy and autonomy protect patient data, barring access to health records unless consent is given by the data subject. This creates a situation in which much of the beneficial records-based research is prevented from being used or is seriously undermined, because the refusal of consent by some patients introduces a systematic deviation, known as selection bias, from a representative sample of the general population, thus distorting research findings. Although research exemptions for the requirement of informed consent exist, they are rarely used in practice due to concerns over liability and a general culture of caution. In this paper, we argue that the problem of research access to sensitive data can be understood as a tension between the medical duties of confidentiality and beneficence. We attempt to show that the requirement of informed consent is not appropriate for all kinds of records-based research by distinguishing studies involving minimal risk from those that feature moderate or greater risks. We argue that the duty of easy rescue—the principle that persons should benefit others when this can be done at no or minimal risk to themselves—grounds the removal of consent requirements for minimally risky records-based research. Drawing on this discussion, we propose a risk-adapted framework for the facilitation of ethical uses of health data for the benefit of society. This article is part of the themed issue ‘The ethical impact of data science’.

Impact of simulation training on self-efficacy of outpatient health care providers to use electronic health records

2015 ◽  
Vol 84 (6) ◽  
pp. 423-429 ◽  
Author(s):  
Jasna Vuk ◽  
Michael E. Anders ◽  
Cynthia C. Mercado ◽  
Robert L. Kennedy ◽  
Jessie Casella ◽  
...  
Keyword(s):  
Health Care ◽  
Electronic Health Records ◽  
Health Care Providers ◽  
Self Efficacy ◽  
Simulation Training ◽  
Care Providers ◽  
Health Records ◽  
Electronic Health

scholarly journals The OpenDeID corpus for patient de-identification

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Jitendra Jonnagaddala ◽  
Aipeng Chen ◽  
Sean Batongbacal ◽  
Chandini Nekkantti
Keyword(s):  
Electronic Health Records ◽  
Health Information ◽  
Sensitive Information ◽  
Protected Health Information ◽  
Patient Privacy ◽  
Health Records ◽  
Automatic Methods ◽  
Electronic Health ◽  
Pathology Reports ◽  
Privacy And Confidentiality

AbstractFor research purposes, protected health information is often redacted from unstructured electronic health records to preserve patient privacy and confidentiality. The OpenDeID corpus is designed to assist development of automatic methods to redact sensitive information from unstructured electronic health records. We retrieved 4548 unstructured surgical pathology reports from four urban Australian hospitals. The corpus was developed by two annotators under three different experimental settings. The quality of the annotations was evaluated for each setting. Specifically, we employed serial annotations, parallel annotations, and pre-annotations. Our results suggest that the pre-annotations approach is not reliable in terms of quality when compared to the serial annotations but can drastically reduce annotation time. The OpenDeID corpus comprises 2,100 pathology reports from 1,833 cancer patients with an average of 737.49 tokens and 7.35 protected health information entities annotated per report. The overall inter annotator agreement and deviation scores are 0.9464 and 0.9726, respectively. Realistic surrogates are also generated to make the corpus suitable for distribution to other researchers.

scholarly journals Exploring Perceptions of Health Care Providers' Use of Electronic Advance Directive Forms in Electronic Health Records

2019 ◽  
Vol 45 (1) ◽  
pp. 17-21
Author(s):  
Bunmi Folarinde ◽  
Gregory Lynn Alexander ◽  
Colleen Galambos ◽  
Bonnie J. Wakefield ◽  
Amy Vogelsmeier ◽  
...  
Keyword(s):  
Health Care ◽  
Electronic Health Records ◽  
Health Care Providers ◽  
Advance Directive ◽  
Care Providers ◽  
Health Records ◽  
Electronic Health

scholarly journals Patient Use and Experience With Online Access to Electronic Health Records in Norway: Results From an Online Survey (Preprint)

2019 ◽  
Author(s):  
Paolo Zanaboni ◽  
Per Egil Kummervold ◽  
Tove Sørensen ◽  
Monika Alise Johansen
Keyword(s):  
Health Care ◽  
Electronic Health Records ◽  
Health Care Providers ◽  
National Health ◽  
Chronic Conditions ◽  
Online Survey ◽  
Health Condition ◽  
Care Providers ◽  
Health Records ◽  
Electronic Health

BACKGROUND The electronic health record (EHR) has been fully established in all Norwegian hospitals. Patient-accessible electronic health records (PAEHRs) are available to citizens aged 16 years and older through the national health portal Helsenorge. OBJECTIVE This study aimed at understanding how patients use PAEHRs. Three research questions were addressed in order to explore (1) characteristics of users, (2) patients’ use of the service, and (3) patient experience with the service. METHODS We conducted an online survey of users who had accessed their EHR online at least once through the national health portal. Patients from two of the four health regions in Norway were invited to participate. Quantitative data were supplemented by qualitative information. RESULTS A total of 1037 respondents participated in the survey, most of whom used the PAEHR regularly (305/1037, 29.4%) or when necessary (303/1037, 29.2%). Service utilization was associated with self-reported health, age, gender, education, and health care professional background. Patients found the service useful to look up health information (687/778, 88.3%), keep track of their treatment (684/778, 87.9%), prepare for a hospital appointment (498/778, 64.0%), and share documents with their general practitioner (292/778, 37.5%) or family (194/778, 24.9%). Most users found it easy to access their EHR online (965/1037, 93.1%) and did not encounter technical challenges. The vast majority of respondents (643/755, 85.2%) understood the content, despite over half of them acknowledging some difficulties with medical terms or phrases. The overall satisfaction with the service was very high (700/755, 92.7%). Clinical advantages to the patients included enhanced knowledge of their health condition (565/691, 81.8%), easier control over their health status (685/740, 92.6%), better self-care (571/653, 87.4%), greater empowerment (493/674, 73.1%), easier communication with health care providers (493/618, 79.8%), and increased security (655/730, 89.7%). Patients with complex, long-term or chronic conditions seemed to benefit the most. PAEHRs were described as useful, informative, effective, helpful, easy, practical, and safe. CONCLUSIONS PAEHRs in Norway are becoming a mature service and are perceived as useful by patients. Future studies should include experimental designs focused on specific populations or chronic conditions that are more likely to achieve clinically meaningful benefits. Continuous evaluation programs should be conducted to assess implementation and changes of wide-scale routine services over time.

HealthChain: A Blockchain for Electronic Health Records (Preprint)

2019 ◽  
Author(s):  
Yonggang Xiao ◽  
Yanbing Liu ◽  
Yunjun Wu ◽  
Tun Li ◽  
Xingping Xian ◽  
...  
Keyword(s):  
Health Care ◽  
Electronic Health Records ◽  
Health Care Providers ◽  
Health Care Professionals ◽  
Functional Requirements ◽  
Care Providers ◽  
Health Records ◽  
Blockchain Technology ◽  
Distributed Ledger ◽  
Electronic Health

BACKGROUND The maintenance of accurate health records of patients is a requirement of health care professionals. Furthermore, these records should be shared across different health care organizations in order for professionals to have a complete review of medical history and avoid missing important information. Nowadays, health care providers use electronic health records (EHRs) as a key to accomplishment of these jobs and delivery of quality care. However, there are technical and legal hurdles that prevent the adoption of these systems, such as the concern about performance and privacy issues. OBJECTIVE The aim of this paper is to build and evaluate an experimental blockchain for EHRs, named HealthChain, which addresses the disadvantages of traditional EHR systems. METHODS HealthChain is built based on consortium blockchain technology. Specifically, three stakeholders, namely hospitals, insurance providers, and governmental agencies, form a consortium that operates under a governance model, which enforces the business logic agreed by all participants. Peer nodes host instance of the distributed ledger consisting of EHRs, and instance of chaincode regulating the permissions of participants; designated orderers establish consensus on the order of EHRs and then disseminate blocks to peers. RESULTS HealthChain achieves the functional and non-functional requirements. While it can store EHRs in distributed ledger and share them among different participants, it demonstrates superior features, such as privacy preserving, security, and high throughout. These are the main reasons why HealthChain is proposed. CONCLUSIONS Consortium blockchain technology can help build EHR system and solve the problems that prevent the adoption of traditional ones.

The My Health Record System: Potential to Undermine the Paradigm of Patient Confidentiality?

2019 ◽  
Vol 42 (2) ◽  
Author(s):  
Gabrielle Wolf ◽  
Danuta Mendelson
Keyword(s):  
Electronic Health Records ◽  
Healthcare Providers ◽  
Health Record ◽  
Sensitive Information ◽  
Record System ◽  
Health Records ◽  
Patient Confidentiality ◽  
Health Practitioners ◽  
Electronic Health ◽  
Traditional Paradigm

Australia’s national electronic health records system – known as the ‘My Health Record (‘MHR’) system’ – may threaten to undermine the traditional paradigm of patient confidentiality within the therapeutic relationship. Historically, patients have felt comfortable imparting sensitive information to their health practitioners on the understanding that such disclosures are necessary and will be relied on principally for the purpose of treating them. The MHR system potentially facilitates access to patients’ health information by individuals and entities beyond the practitioners who are directly providing them with healthcare and, in some circumstances, without the patients’ consent. It may also enable patients’ health practitioners and their employees to read records that those practitioners did not create or receive in the course of treating the patients and that are irrelevant to their treatment of them. The MHR system could have harmful consequences for individual and public health if patients become unwilling to disclose information to their healthcare providers because they fear it will not remain confidential. In addition to examining the risks of breaches of patient confidentiality in the MHR system, this article considers how the potential benefits of an electronic health records system might be achieved while maintaining patient confidentiality to a significant extent.

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