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Analysis of the Updated Swedish Regulatory Framework of the Patient Accessible Electronic Health Record in Relation to Usage Experience.

https://arctichealth.org/en/permalink/ahliterature292465
Source
Stud Health Technol Inform. 2017; 245:798-802
Publication Type
Journal Article
Date
2017
Author
Isabella Scandurra
Maria Pettersson
Benny Eklund
Leif Lyttkens
Author Affiliation
Informatics, School of Business, Örebro University, Örebro, Sweden.
Source
Stud Health Technol Inform. 2017; 245:798-802
Date
2017
Language
English
Publication Type
Journal Article
Keywords
Access to Information
Electronic Health Records
Health Records, Personal
Humans
Patient-Centered Care
Sweden
Telemedicine
Abstract
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.
PubMed ID
29295208 View in PubMed
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Analysis of Voluntary User Feedback of the Swedish National PAEHR Service.

https://arctichealth.org/en/permalink/ahliterature302936
Source
Stud Health Technol Inform. 2019 Aug 21; 264:1126-1130
Publication Type
Journal Article
Date
Aug-21-2019
Author
Annika Bärkås
Isabella Scandurra
Maria Hägglund
Author Affiliation
Health Informatics Centre, Karolinska Institutet, Stockholm, Sweden.
Source
Stud Health Technol Inform. 2019 Aug 21; 264:1126-1130
Date
Aug-21-2019
Language
English
Publication Type
Journal Article
Keywords
Electronic Health Records
Feedback
Health Records, Personal
Humans
Sweden
Telemedicine
Abstract
"Journalen" is a patient accessible electronic health record (PAEHR) and the national eHealth service for Sweden's citizens to gain access to their EHR. The Swedish national eHealth organization Inera, responsible for Journalen, created an inbox to receive voluntary user feedback about Journalen in order to improve the service from the user perspective. Based on voluntary user feedback via email. This study explored patients' experiences of using the national eHealth service and identified pros and cons. A mixed method content analysis was performed. In total, 1084 emails from 2016-2017 have been analyzed. 9 categories were identified, the most frequent ones related to questions about why some information was not accessible (due to regional differencies), feedback (including only positive or negative comments as well as constructive improvement suggestions), and emails about errors that user found in their record. These data can be successfully used to continuously improve an already implemented eHealth service.
PubMed ID
31438100 View in PubMed
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An example of an application of the semiotic inspection method in the domain of computerized patient record system.

https://arctichealth.org/en/permalink/ahliterature261683
Source
Stud Health Technol Inform. 2013;192:471-5
Publication Type
Article
Date
2013
Author
Weronika Tancredi
Olof Torgersson
Source
Stud Health Technol Inform. 2013;192:471-5
Date
2013
Language
English
Publication Type
Article
Keywords
Dental Records
Electronic Health Records
Health Records, Personal
Natural Language Processing
Software
Software Validation
Sweden
User-Computer Interface
Workflow
Abstract
Efficiently navigating through an interface and conducting work tasks in flow is what GUI designers strive for. Dental professionals, who alternate between examination and treatment of a patient and insertion of data into the Computerized Patient Record system, particularly need an interface that would facilitate the workflow. In this paper we present an inspection evaluation of an existing and widely used Computerized Patient Record system. The Semiotic Inspection Method was applied with the expectation that the method could provide evidence that task flow, navigation and wayfinding were major usability issues of the interface. Also expected was that the Semiotic Inspection would reveal the means and strategies used in the interface in order to communicate the flow. The analysis conducted using the Semiotic Inspection Method showed inconsistencies in the communication of the way forward through the interface. In addition, the profile of the users, regarding digital skills, appears to be ambiguous. Finally, the strategies used in the interface for conveying the workflow could be identified as well.
PubMed ID
23920599 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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Associations between presence of relevant information in referrals to radiology and prevalence rates in patients with suspected pulmonary embolism.

https://arctichealth.org/en/permalink/ahliterature108140
Source
Acad Radiol. 2013 Sep;20(9):1115-21
Publication Type
Article
Date
Sep-2013
Author
Charlotta Hedner
Pia C Sundgren
Aine Marie Kelly
Author Affiliation
Center for Medical Imaging and Physiology, Skåne University Hospital, Lund University, Lund, Sweden.
Source
Acad Radiol. 2013 Sep;20(9):1115-21
Date
Sep-2013
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Aged
Aged, 80 and over
Child
Child, Preschool
Decision Making
Female
Health Records, Personal
Humans
Infant
Infant, Newborn
Information Dissemination
Male
Middle Aged
Prevalence
Pulmonary Embolism - epidemiology - radiography
Referral and Consultation - utilization
Sweden - epidemiology
Tomography, X-Ray Computed - utilization
Young Adult
Abstract
The purpose of this study was to assess if the presence of information including the pretest probability (Wells score), other known risk factors, and symptoms given on referrals for computed tomography (CT) pulmonary angiography correlated with prevalence rates for pulmonary embolism (PE). Also, to evaluate for differences between a university and a regional hospital setting regarding patient characteristics, amount of relevant information provided on referrals, and prevalence rates for pulmonary embolism.
Retrospective review of all consecutive referrals (emergency room, inpatient, and outpatient) for CT performed on children and adults for suspected PE from two sites: a tertiary (university) hospital (site 1) and a secondary (regional) hospital (site 2) over a 5-year period.
The overall prevalence rate was 510/3641 or 14% of all referrals. Significantly higher number of males had a positive CT compared to women (18% versus 12%, P
PubMed ID
23931425 View in PubMed
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Attitudes to sharing personal health information in living kidney donation.

https://arctichealth.org/en/permalink/ahliterature144792
Source
Clin J Am Soc Nephrol. 2010 Apr;5(4):717-22
Publication Type
Article
Date
Apr-2010
Author
Patricia Hizo-Abes
Ann Young
Peter P Reese
Phil McFarlane
Linda Wright
Meaghan Cuerden
Amit X Garg
Author Affiliation
London Kidney Clinical Research Unit, Room ELL-101, Westminster, London Health Sciences Centre, 800 Commissioners Road East, London, Ontario N6A 4G5, Canada.
Source
Clin J Am Soc Nephrol. 2010 Apr;5(4):717-22
Date
Apr-2010
Language
English
Publication Type
Article
Keywords
Access to Information - legislation & jurisprudence
Adult
Aged
Attitude of Health Personnel
Confidentiality - legislation & jurisprudence - psychology
Cross-Sectional Studies
Female
Health Knowledge, Attitudes, Practice
Health Policy
Health Records, Personal
Humans
Informed Consent - legislation & jurisprudence - psychology
Kidney Transplantation - legislation & jurisprudence - psychology
Living Donors - legislation & jurisprudence - psychology
Male
Middle Aged
Ontario
Patient Education as Topic
Practice Guidelines as Topic
Questionnaires
Abstract
In living kidney donation, transplant professionals consider the rights of a living kidney donor and recipient to keep their personal health information confidential and the need to disclose this information to the other for informed consent. In incompatible kidney exchange, personal health information from multiple living donors and recipients may affect decision making and outcomes.
We conducted a survey to understand and compare the preferences of potential donors (n = 43), potential recipients (n = 73), and health professionals (n = 41) toward sharing personal health information (in total 157 individuals).
When considering traditional live-donor transplantation, donors and recipients generally agreed that a recipient's health information should be shared with the donor (86 and 80%, respectively) and that a donor's information should be shared with the recipient (97 and 89%, respectively). When considering incompatible kidney exchange, donors and recipients generally agreed that a recipient's information should be shared with all donors and recipients involved in the transplant (85 and 85%, respectively) and that a donor's information should also be shared with all involved (95 and 90%, respectively). These results were contrary to attitudes expressed by transplant professionals, who frequently disagreed about whether such information should be shared.
Future policies and practice could facilitate greater sharing of personal health information in living kidney donation. This requires a consideration of which information is relevant, how to put it in context, and a plan to obtain consent from all concerned.
Notes
Cites: Am J Transplant. 2003 Jul;3(7):830-412814474
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PubMed ID
20299371 View in PubMed
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Blood politics, ethnic identity, and racial misclassification among American Indians and Alaska Natives.

https://arctichealth.org/en/permalink/ahliterature258289
Source
J Environ Public Health. 2014;2014:321604
Publication Type
Article
Date
2014
Author
Emily A Haozous
Carolyn J Strickland
Janelle F Palacios
Teshia G Arambula Solomon
Author Affiliation
University of New Mexico College of Nursing, MSC 09 5350, 1 University of New Mexico, Albuquerque, NM 87131, USA.
Source
J Environ Public Health. 2014;2014:321604
Date
2014
Language
English
Publication Type
Article
Keywords
Alaska
Health Records, Personal
Humans
Indians, North American - classification - ethnology
Inuits - classification - ethnology
Politics
Population Surveillance
Public Health
Registries
Abstract
Misclassification of race in medical and mortality records has long been documented as an issue in American Indian/Alaska Native data. Yet, little has been shared in a cohesive narrative which outlines why misclassification of American Indian/Alaska Native identity occurs. The purpose of this paper is to provide a summary of the current state of the science in racial misclassification among American Indians and Alaska Natives. We also provide a historical context on the importance of this problem and describe the ongoing political processes that both affect racial misclassification and contribute to the context of American Indian and Alaska Native identity.
Notes
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PubMed ID
24669226 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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Commentary: Sweden rolls out online access to medical records and is developing new e-health services to enable people to manage their care.

https://arctichealth.org/en/permalink/ahliterature263144
Source
BMJ. 2015;350:h359
Publication Type
Article
Date
2015

Comparing the retrospective reports of fatigue using the Fatigue Symptom Index with daily diary ratings in women receiving chemotherapy for gynecologic cancer.

https://arctichealth.org/en/permalink/ahliterature118883
Source
J Pain Symptom Manage. 2013 Aug;46(2):282-8
Publication Type
Article
Date
Aug-2013
Author
Kristin M Phillips
Leigh Anne Faul
Brent J Small
Paul B Jacobsen
Sachin M Apte
Heather S L Jim
Author Affiliation
Department of Health Outcomes and Behavior, Moffitt Cancer Center, 12902 Magnolia Drive, Tampa, FL 33612, USA.
Source
J Pain Symptom Manage. 2013 Aug;46(2):282-8
Date
Aug-2013
Language
English
Publication Type
Article
Keywords
Aged
Antineoplastic Agents - therapeutic use
Caregivers
Causality
Comorbidity
Drug Therapy - statistics & numerical data
Family
Fatigue - diagnosis - epidemiology
Female
Genital Neoplasms, Female - diagnosis - drug therapy - epidemiology
Health Records, Personal
Humans
Medical Records - statistics & numerical data
Middle Aged
Ontario - epidemiology
Palliative Care - statistics & numerical data
Patient Satisfaction - statistics & numerical data
Prevalence
Quality of Life
Questionnaires
Reproducibility of Results
Retrospective Studies
Risk factors
Sensitivity and specificity
Severity of Illness Index
Terminal Care - standards
Treatment Outcome
Women's health
Abstract
Fatigue, one of the most common side effects of chemotherapy, is typically assessed via retrospective recall (e.g., over the past week). It is unknown how such retrospective recall of fatigue correlates with daily ratings among people receiving chemotherapy.
The current study compared fatigue recorded in daily diaries with retrospective ratings using the Fatigue Symptom Inventory (FSI) in patients receiving chemotherapy for gynecologic cancer.
During the week before and the week after their first infusion of chemotherapy, patients completed daily diaries at 10 AM, 2, and 6 PM and the FSI at the end of each week.
FSI and diary ratings of peak, lowest, and average fatigue were significantly correlated (P 
Notes
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PubMed ID
23159686 View in PubMed
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39 records – page 1 of 4.