Global e-Health Research and Training Program, G204 Health Sciences Centre, Faculty of Medicine, University of Calgary, 3330 Hospital Drive NW, Calgary, Alberta, Canada T2N 4N1. rescott@ucalgary.ca
Challenges to the development of appropriate yet adaptable policy and tools for security of the individual patient electronic health record (EHR) are proving to be significant. Compounding this is the unique capability of e-health to transgress all existing geo-political and other barriers. Initiatives to develop and advance policy, standards, and tools in relation to EHR access control and authorisation management must address this capability. Currently policy development initiatives take place largely in an isolated manner. This jeopardises the potential of e-health because decisions made in one jurisdiction might hamper, even prevent, an e-health opportunity in another. This paper places access and authorisation issues in an overall policy context through describing current Canadian initiatives. The National Initiative for Telehealth (NIFTE) Guidelines project is developing a framework of national guidelines for telehealth. The Policy and Peer Permission (PPP) project is developing a unique tool that provides persistent protection of data. The new corporate body 'Infoway' is developing a pan-Canadian electronic health record solution. Finally, the Glocal e-Health Policy initiative is developing a tool with which to identify and describe the inter-relationships of e-health issues amongst policy levels, themes, and actors.
Access and benefits sharing of genetic resources and associated traditional knowledge in northern Canada: understanding the legal environment and creating effective research agreements
Pages 912-920 in N. Murphy and A. Parkinson, eds. Circumpolar Health 2012: Circumpolar Health Comes Full Circle. Proceedings of the 15th International Congress on Circumpolar Health, Fairbanks, Alaska, USA, August 5-10, 2012. International Journal of Circumpolar Health 2013;72 (Suppl 1):912-920
School of Public Health, University of Alberta, Edmonton, Canada
Source
Pages 912-920 in N. Murphy and A. Parkinson, eds. Circumpolar Health 2012: Circumpolar Health Comes Full Circle. Proceedings of the 15th International Congress on Circumpolar Health, Fairbanks, Alaska, USA, August 5-10, 2012. International Journal of Circumpolar Health 2013;72 (Suppl 1):912-920
The use of electronic health records (EHRs) to support the organization and delivery of healthcare is evolving rapidly. However, little is known regarding potential variation in access to EHRs by provider type or care setting. This paper reports on observed variation in the perceptions of access to EHRs by a wide range of cancer care providers covering diverse cancer care settings in Ontario, Canada.
Perspectives were sought regarding EHR access and health record completeness for cancer patients as part of an internet survey of 5663 cancer care providers and administrators in Ontario. Data were analyzed using a multilevel logistic regression model. Provider type, location of work, and access to computer or internet were included as covariates in the model.
A total of 1997 of 5663 (35%) valid responses were collected. Focusing on data from cancer care providers (N = 1247), significant variation in EHR access and health record completeness was observed between provider types, location of work, and level of computer access. Providers who worked in community hospitals were half as likely as those who worked in teaching hospitals to have access to their patients' EHRs (OR 0.45 95% CI: 0.24-0.85, p
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Expanding Internet-based interventions for substance use will have little benefit if heavy substance users are unlikely to have Internet access. This paper explored whether access to the Internet was a potential barrier to the provision of services for smokers, drinkers and illicit drug users.
As part of a general population telephone survey of adults in Ontario, Canada, respondents were asked about their use of different drugs and also about their use of the Internet.
Pack-a-day smokers were less likely (48%) to have home Internet access than non-smokers (69%), and current drinkers (73%) were more likely to have home access than abstainers (50%). These relationships remained true even after controlling for demographic characteristics. Internet access was less clearly associated with cannabis or cocaine use.
Even though there is variation in access among smokers, drinkers and illicit drug users, the World Wide Web remains an excellent opportunity to potentially provide services for substance abusers who might never access treatment in person because, in absolute terms, the majority of substance abusers do use the Internet.
This paper begins with a discussion of the value of privacy, especially for medical records in an age of advancing technology. I then examine three alternative approaches to protection of medical records: reliance on governmental guidelines, the use of corporate self-regulation, and my own third hybrid view on how to maintain a presumption in favor of privacy with respect to medical information, safeguarding privacy as vigorously and comprehensively as possible, without sacrificing the benefits of new information technology in medicine. None of the three models I examine are unproblematic, yet it is crucial to weigh the strengths and weaknesses of these alternative approaches.
This study sought to determine public opinion on alternatives to project-specific consent for use of their personal information for health research.
The authors conducted a fixed-response random-digit dialed telephone survey of 1,230 adults across Canada.
We measured attitudes toward privacy and health research; trust in different institutions to keep information confidential; and consent choice for research use of one's own health information involving medical record review, automated abstraction of information from the electronic medical record, and linking education or income with health data.
Support was strong for both health research and privacy protection. Studying communicable diseases and quality of health care had greatest support (85% to 89%). Trust was highest for data institutes, university researchers, hospitals, and disease foundations (78% to 80%). Four percent of respondents thought information from their paper medical record should not be used at all for research, 32% thought permission should be obtained for each use, 29% supported broad consent, 24% supported notification and opt out, and 11% felt no need for notification or consent. Opinions were more polarized for automated abstraction of data from the electronic medical record. Respondents were more willing to link education with health data than income.
Most of the public supported alternatives to study-specific consent, but few supported use without any notification or consent. Consent choices for research use of one's health information should be documented in the medical record. The challenge remains how best to elicit those choices and ensure that they are up-to-date.
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In Sweden, all citizens can (in 2017) access their health data online from all county councils using one national eHealth service. However, depending on where the patient lives, different information is provided as care providers have assessed differently how to apply the National Regulatory Framework (NRF). The NRF recently was updated and this paper analyses version 2.0 should now serve as the guideline for all county councils. Potential improvements are analyzed in relation to patient experiences of using the service, and the rationale for each change in the NRF is discussed. Two real case quotations are used to illustrate potential implications for the patient when the new version is placed into operation. Results indicate that this NRF allows for opportunities to create a national eHealth service that better supports patient-centered care and improves health information outcome.
Use of the Internet for health promotion is increasing; however, the lack of published research regarding website usability suggests that health promotion websites are being developed without consultation with their users or formal evaluation. This study conducted usability testing of an existing health promotion website to inform modifications and to identify common usability themes that should be addressed by organisations developing or maintaining a health promotion website.
A combination of qualitative and quantitative techniques were implemented during the usability testing sessions to gather data from users while completing tasks on the website. Techniques included performance measures (time taken), direct observation (participant observation) and subjective user preferences (questionnaire and interview).
Improvements to the website were measured in terms of reduced problems reported, reduced time taken to complete tasks and increased subjective reports. Seven usability themes emerged from the data: design, feedback, format, instructions, navigation, terminology and learnability.
This study demonstrates the application of usability testing to the design and modification of a health promotion website and illustrates the areas or themes that can be used as a framework for testing and modification.
The objective of the study is to examine attitudes towards aspects of donation treatment based on a national Swedish sample of gamete donors and couples undergoing assisted reproductive techniques (ART).
The present study was part of the Swedish study on gamete donation, a prospective longitudinal cohort study including all fertility clinics performing gamete donation in Sweden. The sample comprised 164 oocyte donors, 89 sperm donors, 251 people treated with their own gametes (in vitro fertilisation (IVF)), 213 oocyte recipients and 487 sperm recipients. A study-specific questionnaire was used.
Attitudes vary widely between couples using their own gametes for IVF and those receiving or donating oocyte or sperm. The groups differed in their responses to most questions. Oocyte and sperm donors were more likely to agree with the statements "The donor should be informed if the donation results in a child" and "Offspring should receive some information about the donor during mature adolescence" than recipients of donated gametes and couples treated with their own gametes.
Donor recipients, IVF couples and donors expressed different attitudes towards openness and information when it came to gamete donation, and those differences seemed to depend on their current reproductive situation.
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