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Access to health care information: legal imperative or moral responsibility?

https://arctichealth.org/en/permalink/ahliterature104003
Source
Health Law Can. 1990;10(3):213-4
Publication Type
Article
Date
1990

[Access to own health information and services on the Internet by disability pensioners and other citizens]

https://arctichealth.org/en/permalink/ahliterature91436
Source
Laeknabladid. 2008 Nov;94(11):729-35
Publication Type
Article
Date
Nov-2008
Author
Halldórsdóttir Gyda
Thoroddsen Asta St
Author Affiliation
Heilsuneti ehf. gyda@heilsunet.is
Source
Laeknabladid. 2008 Nov;94(11):729-35
Date
Nov-2008
Language
Icelandic
Publication Type
Article
Keywords
Adolescent
Adult
Aged
Consumer Health Information
Disabled Persons - psychology
Health Knowledge, Attitudes, Practice
Health Services Research
Humans
Iceland
Insurance, Disability
Internet
Medical Records Systems, Computerized
Middle Aged
Patient Access to Records
Patient satisfaction
Pensions
Perception
Questionnaires
Social Security
Young Adult
Abstract
OBJECTIVE: To study Icelandic citizens' perception, attitude and preferences regarding access to own health information and interactive services at the State Social Security Institute of Iceland (SSSI). Hypotheses regarding differences between disability pensioners and other citizens were put forward. MATERIAL AND METHODS: A descriptive mail survey was performed with a random sample from the Icelandic population, 1400 individuals, age 16 to 67, divided into two groups of 700 each: (1) persons entitled to disability pension (2) other citizens in Iceland. The questionnaire consisted of 56 questions, descriptive statistics were used and Chi square for comparison with 95% as confidence level of significance. Response rate was 34.9%. RESULTS: Perception of rights to access own's health information was significantly higher by pensioners than other citizens. Attitude concerning impact of access was in general positive, with pensioners significantly more positive about effectiveness, perception of health, communication and decisions owing to services, access at SSSI, maintaining health records and controlling access. CONCLUSIONS: The study, the first of its kind in Iceland, supports previous research. The results, as well as foreign models of research projects, are recommended to be used for evolution of electronic health services and researching employees' viewpoints. Future research in Iceland should address the impact of interactive health communication on quality of life, health and services' efficiency.
PubMed ID
18974434 View in PubMed
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Access to web-based personalized antenatal health records for pregnant women: a randomized controlled trial.

https://arctichealth.org/en/permalink/ahliterature159321
Source
J Obstet Gynaecol Can. 2008 Jan;30(1):38-43
Publication Type
Article
Date
Jan-2008
Author
Elizabeth Shaw
Michelle Howard
David Chan
Heather Waters
Janusz Kaczorowski
David Price
Joyce Zazulak
Author Affiliation
Department of Family Medicine, McMaster University, Hamilton ON.
Source
J Obstet Gynaecol Can. 2008 Jan;30(1):38-43
Date
Jan-2008
Language
English
Publication Type
Article
Keywords
Adult
Canada
Female
Gestational Age
Humans
Internet
Medical Records
Patient Access to Records
Patient satisfaction
Pregnancy
Prenatal Care
Single-Blind Method
Abstract
During pregnancy, the information needs of patients are high and effective information sharing between patients and health care providers is of particular importance. We conducted a randomized controlled trial to evaluate the effect of providing pregnant women with secure access to their antenatal health records on their uptake of, and satisfaction with, relevant information.
Women presenting to a primary care maternity centre before 28 weeks' gestation were randomized to receive access either to a secure website with links to general pregnancy health information alone (GI group) or to the same website with access to their own antenatal health record (PI group). Primary outcomes included frequency of use, and satisfaction with and perceived usefulness of the web-based information.
We approached 199 women regarding participation in the study; 193 agreed to participate, and 97 were randomized to the PI group and 96 to the GI group. The mean number of log-ins to the website in the PI group subsequently was almost six times the number of log-ins in the GI group (10.4 +/- 17.8 vs. 1.8 +/- 1.4; P
PubMed ID
18198066 View in PubMed
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The anxious wait: assessing the impact of patient accessible EHRs for breast cancer patients.

https://arctichealth.org/en/permalink/ahliterature141092
Source
BMC Med Inform Decis Mak. 2010;10:46
Publication Type
Article
Date
2010
Author
David Wiljer
Kevin J Leonard
Sara Urowitz
Emma Apatu
Christine Massey
Naa Kwarley Quartey
Pamela Catton
Author Affiliation
Department of Radiation Oncology, University of Toronto, Toronto, ON, Canada. David.Wiljer@rmp.uhn.on.ca
Source
BMC Med Inform Decis Mak. 2010;10:46
Date
2010
Language
English
Publication Type
Article
Keywords
Anxiety - diagnosis
Breast Neoplasms - psychology
Canada
Educational Status
Female
Health Records, Personal - psychology
Humans
Middle Aged
Multivariate Analysis
Online Systems
Patient Access to Records - psychology
Patient Participation
Psychometrics
Qualitative Research
Questionnaires
Self Efficacy
Abstract
Personal health records (PHRs) provide patients with access to personal health information (PHI) and targeted education. The use of PHRs has the potential to improve a wide range of outcomes, including empowering patients to be more active participants in their care. There are a number of widespread barriers to adoption, including privacy and security considerations. In addition, there are clinical concerns that patients could become anxious or distressed when accessing complex medical information. This study assesses the implementation of a PHR, and its impact on anxiety levels and perceptions of self-efficacy in a sample of breast cancer patients.
A quasi-experimental pre-test/post-test design was used to collect data from participants to evaluate the use of the PHR. Study participants completed background and pre-assessment questionnaires and were then registered into the portal. By entering an activation key, participants were then able to review their lab results and diagnostic imaging reports. After six weeks, participants completed post-assessment questionnaires and usability heuristics. All data were collected using an online survey tool. Data were cleaned and analyzed using SAS v9.1.
A total of 311 breast cancer patients completed demographic and pre-assessment questionnaires, 250 registered to use the online intervention, and 125 participants completed all required study elements. Matching the pre- and post-anxiety scores demonstrated a decrease in mean anxiety scores (-2.2, p = 0.03); the chemotherapy sub-group had a statistically insignificant mean increase (1.8, p = .14). There was no mean change in self-efficacy scores.
Participants generally found the portal easy to use; however, the perceived value of improved participation was not detected in the self-efficacy scores. Having access to personal health information did not increase anxiety levels. While these results suggest that the use of this PHR may be of benefit for informing patients, further research is required to investigate the impact on the patients experiences, their participation in their care, their relationships with the health care team, and their health outcomes.
Notes
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PubMed ID
20809950 View in PubMed
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Challenges of stimulating a market for social innovation - provision of a national health account.

https://arctichealth.org/en/permalink/ahliterature277535
Source
Stud Health Technol Inform. 2015;210:546-50
Publication Type
Article
Date
2015
Author
Sofie Wass
Vivian Vimarlund
Source
Stud Health Technol Inform. 2015;210:546-50
Date
2015
Language
English
Publication Type
Article
Keywords
Electronic Health Records - organization & administration
Marketing of Health Services - organization & administration
Models, organizational
National health programs - organization & administration
Organizational Innovation
Patient Access to Records
Social Change
Sweden
Abstract
Innovation in healthcare can be associated with social innovation and the mission to contribute to a shared value that benefits not only individuals or organizations but the society as a whole. In this paper, we present the prerequisites of stimulating a market for social innovations by studying the introduction of a national health account. The results show that there is a need to clarify if a national health account should be viewed as a public good or not, to clarify the financial responsibilities of different actors, to establish clear guidelines and to develop regulations concerning price, quality and certification of actors. The ambition to stimulate the market through a national health account is a promising start. However, the challenges have to be confronted in order for public and private actors to collaborate and build a market for social innovations such as a national health account.
PubMed ID
25991207 View in PubMed
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Clinical documentation as a source of information for patients - possibilities and limitations.

https://arctichealth.org/en/permalink/ahliterature261677
Source
Stud Health Technol Inform. 2013;192:793-7
Publication Type
Article
Date
2013
Author
Torunn Wibe
Mirjam Ekstedt
Ragnhild Hellesø
Karl Øyri
Laura Slaughter
Source
Stud Health Technol Inform. 2013;192:793-7
Date
2013
Language
English
Publication Type
Article
Keywords
Adult
Data Collection
Documentation - statistics & numerical data
Electronic Health Records - statistics & numerical data
Health Records, Personal
Humans
Middle Aged
Norway
Patient Access to Records - statistics & numerical data
Patient Education as Topic - statistics & numerical data
Patient Participation - statistics & numerical data
Patient Satisfaction - statistics & numerical data
Young Adult
Abstract
Recent legislation in many countries has given patients the right to access their own patient records. Making health-care professionals' assessments and decisions more transparent by giving patients access to their records is expected to provide patients with useful health information and reduce the power imbalance between patient and provider. We conducted both a mail survey and a face-to-face interview study, including patients who had requested a paper copy of their patient records (EPR), to explore their experiences. For many study participants, a view of their records filled in holes in the oral information they previously received. They had problems understanding parts of what they read, but rarely asked for help. Instead they searched for explanations on the Internet or attempted to understand based on the context. Patients are still afraid of seeming suspicious or displeased if they indicate that they would like to read their records. Health-care organizations should consider actively offering patients the chance to view their clinical documentation to a larger extent than what has been done so far.
PubMed ID
23920666 View in PubMed
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41 records – page 1 of 5.