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Bärkås, A., Scandurra, I. & Hägglund, M. (2019). Analysis of Voluntary User Feedback of the Swedish National PAEHR Service. Studies in Health Technology and Informatics, 264, 1126-1130
Open this publication in new window or tab >>Analysis of Voluntary User Feedback of the Swedish National PAEHR Service
2019 (English)In: Studies in Health Technology and Informatics, ISSN 0926-9630, E-ISSN 1879-8365, Vol. 264, p. 1126-1130Article in journal (Refereed) Published
Abstract [en]

"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.

Place, publisher, year, edition, pages
IOS Press, 2019
Keywords
Consumer Health Informatics, Electronic Health Records, Evaluation, Health Record, Patient Portals, Personal
National Category
Social and Clinical Pharmacy
Identifiers
urn:nbn:se:oru:diva-75904 (URN)10.3233/SHTI190401 (DOI)31438100 (PubMedID)
Available from: 2019-09-09 Created: 2019-09-09 Last updated: 2019-09-09Bibliographically approved
Hägglund, M., DesRoches, C., Petersen, C. & Scandurra, I. (2019). Patients' access to health records. BMJ. British Medical Journal, 367, Article ID l5725.
Open this publication in new window or tab >>Patients' access to health records
2019 (English)In: BMJ. British Medical Journal, E-ISSN 1756-1833, Vol. 367, article id l5725Article in journal, Editorial material (Refereed) Published
Place, publisher, year, edition, pages
BMJ Publishing Group Ltd, 2019
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:oru:diva-77027 (URN)10.1136/bmj.l5725 (DOI)31578180 (PubMedID)
Available from: 2019-10-07 Created: 2019-10-07 Last updated: 2019-10-07Bibliographically approved
Traore, L., Assélé Kama, A., Lim Choi Keung, S., Karni, L., Klein, G. O., Lilja, M., . . . Jaulent, M.-C. (2019). User-Centered Design of the C3-Cloud Platform for Elderly with Multiple Diseases: Functional Requirements and Application Testing. In: Lucila Ohno-Machado, Brigitte Séroussi (Ed.), MEDINFO 2019: Health and Wellbeing e-Networks for All. Paper presented at 17th World Congress of Medical and Health Informatics (MEDINFO 2019), Lyon, France, (pp. 843-847). IOS Press
Open this publication in new window or tab >>User-Centered Design of the C3-Cloud Platform for Elderly with Multiple Diseases: Functional Requirements and Application Testing
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2019 (English)In: MEDINFO 2019: Health and Wellbeing e-Networks for All / [ed] Lucila Ohno-Machado, Brigitte Séroussi, IOS Press, 2019, p. 843-847Conference paper, Oral presentation with published abstract (Refereed)
Abstract [en]

The number of patients with multimorbidity has been steadily increasing in the modern aging societies. The European C3-Cloud project provides a multidisciplinary and patient-centered “Collaborative Care and Cure-system” in the management of elderly with multimorbidity, enabling continous coordination of care activities between multidisciplinary care teams (MDTs), patients and informal care givers (ICG). In this paper, we report how various components of the infrastructure were tested to fulfill the functional requirements and how the entire system was subjected to an early application testing involving different groups of end-users. MDTs from participating European regions were involved in requirement elicitation and test formulation, resulting in 57 questions, distributed via an internet platform, to 48 test participants (22 MDTs, 26 patients) from three pilot sites. The results indicate an overall high level of satisfaction for all Information and Communication Technologie (ICT) components among the users. The early testing also provided user feedback important to consider for technical improvement of the entire system. 

Place, publisher, year, edition, pages
IOS Press, 2019
Series
Studies in Health Technology and Informatics, ISSN 0926-9630, E-ISSN 1879-8365 ; 264
National Category
Health Sciences Information Systems, Social aspects
Identifiers
urn:nbn:se:oru:diva-76079 (URN)10.3233/SHTI190342 (DOI)978-1-64368-002-6 (ISBN)978-1-64368-003-3 (ISBN)
Conference
17th World Congress of Medical and Health Informatics (MEDINFO 2019), Lyon, France,
Available from: 2019-09-04 Created: 2019-09-04 Last updated: 2019-09-09Bibliographically approved
Kolkowska, E., Scandurra, I., Avatare Nöu, A., Sjölinder, M. & Memedi, M. (2018). A user-centered ethical assessment of welfare technology for elderly. In: Jia Zhou, Gavriel Salvendy (Ed.), Human Aspects of IT for the Aged Population. Applications in Health, Assistance, and Entertainment: . Paper presented at 4th International Conference on Human Aspects of IT for the Aged Population (ITAP 2018), Held as Part of HCI International 2018, Las Vegas, United States, July 15-20, 2018 (pp. 59-73). Springer
Open this publication in new window or tab >>A user-centered ethical assessment of welfare technology for elderly
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2018 (English)In: Human Aspects of IT for the Aged Population. Applications in Health, Assistance, and Entertainment / [ed] Jia Zhou, Gavriel Salvendy, Springer, 2018, p. 59-73Conference paper, Published paper (Refereed)
Abstract [en]

Welfare technology (WT) is often developed with a technical perspective, and little consideration is taken regarding the involvement of important ethical considerations and different values that come up during the development and implementation of WT. Safety, security and privacy are significant, as well as the usability and overall benefit of the tool, but to date assessments often lack a holistic picture of the WT as seen by the users. This paper suggests a user-centered ethical assessment (UCEA) framework for WT to be able to evaluate ethical consequences as a part of the user-centered aspects. Building on established methodologies from research on ethical considerations, as well as the research domain of human-computer interaction, this assessment framework joins knowledge of ethical consequences with aspects affecting the “digitalization with the individual in the center”, e.g. privacy, safety, well-being, dignity, empowerment and usability. The framework was applied during development of an interface for providing symptom information to Parkinson patients. The results showed that the UCEA framework directs the attention to values emphasized by the patients. Thus, functionality of the system was evaluated in the light of values and expected results of the patients, thereby facilitating follow-up of a user-centered assessment. The framework may be further developed and tested, but in this study it served as a working tool for assessing ethical consequences of WT as a part of user-centered aspects.

Place, publisher, year, edition, pages
Springer, 2018
Series
Lecture Notes in Computer Science, ISSN 0302-9743, E-ISSN 1611-3349 ; 10927
Keywords
Ethical evaluation, Elderly, Welfare technology, Assistive technology, Ambient-assisted living, Health-enabling technology, Framework, User-centered, Assessment
National Category
Human Computer Interaction
Research subject
Informatics
Identifiers
urn:nbn:se:oru:diva-68527 (URN)10.1007/978-3-319-92037-5_6 (DOI)2-s2.0-85050586674 (Scopus ID)978-3-319-92036-8 (ISBN)978-3-319-92037-5 (ISBN)
Conference
4th International Conference on Human Aspects of IT for the Aged Population (ITAP 2018), Held as Part of HCI International 2018, Las Vegas, United States, July 15-20, 2018
Projects
EMPARK
Funder
Knowledge Foundation
Available from: 2018-08-20 Created: 2018-08-20 Last updated: 2018-08-22Bibliographically approved
Huvila, I., Enwald, H., Eriksson-Backa, K., Hirvonen, N., Nguyen, H. & Scandurra, I. (2018). Anticipating ageing: Older adults reading their medical records. Information Processing & Management, 54(3), 394-407
Open this publication in new window or tab >>Anticipating ageing: Older adults reading their medical records
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2018 (English)In: Information Processing & Management, ISSN 0306-4573, E-ISSN 1873-5371, Vol. 54, no 3, p. 394-407Article in journal (Refereed) Published
Abstract [en]

In spite of the general interest in health information behaviour, there is little earlier research on how older adults, who are still active in working life but approaching retirement, differ from other age groups. A survey with Swedish patients who had ordered and read their medical record was conducted to map the preferences and motivations of older adults (born 1946-1960) ordering a copy of their medical record, and using medical records based e-health and information services in the future. The results do not indicate an obvious linear relationship between age and motivation to use online health information but show several differences between the age groups. Older adults were less interested in communication with their medical doctor by e-mail. Yet, they had searched health information in the Internet during the last week more likely than young. They were more inclined to read medical record to get an overview of their health than young, but less confident that they understood most of the content or turn to their family and friends to seek help than the elderly. When compared to younger adults and elderly people, older adults are the least confident and least motivated to use online health information. It is suggested that older adulthood can be seen as a transitory stage of life when the need of health information increases and engagement with health changes. The results agree with prior research on the potential usefulness of (online) medical records as a way to inform citizens. However, specific provision strategies may be necessary to match the needs and motivations of different age groups.

Place, publisher, year, edition, pages
Elsevier, 2018
Keywords
Health information behaviour, Medical records, Older adults, Health information, Personal information management
National Category
Computer Sciences
Identifiers
urn:nbn:se:oru:diva-66837 (URN)10.1016/j.ipm.2018.01.007 (DOI)000429398700004 ()2-s2.0-85042491533 (Scopus ID)
Funder
VINNOVAForte, Swedish Research Council for Health, Working Life and Welfare, 2016-00623
Note

Funding Agency:

ICT Policy Support Programme (ICT PSP) as part of the Competitiveness and Innovation Framework Programme of the European Commission

Available from: 2018-05-02 Created: 2018-05-02 Last updated: 2018-05-02Bibliographically approved
Moll, J., Cajander, Å., Grünlog, C. & Scandurra, I. (2018). Identifying the Need of Self-reported Data and Self-measurements for Diagnosis and Treatment of Cancer. In: : . Paper presented at Medical Informatics Europe (MIE 2018), Gothenburg, Sweden, April 24-26, 2018.
Open this publication in new window or tab >>Identifying the Need of Self-reported Data and Self-measurements for Diagnosis and Treatment of Cancer
2018 (English)Conference paper, Published paper (Other academic)
Abstract [en]

Today, numerous data sources are available to healthcare professionals for diagnosing and treating cancer, but there are also data captured by patients, e.g. related to daily progress, which are not readily accessible to healthcare. In this workshop, we will use the critical incidents technique to inspire participants to elaborate on the need of using new data collections and measurements, for example from continuous self-tracking, as well as utilizing already existing data in new ways for diagnoses and treatment of cancer. Real-life critical incidents related to patients, healthcare professionals, and researchers, will be discussed and used as a basis for scenarios that will illustrate future visions of how self-reported data and self-measurements should be used in combination with existing data sources.

National Category
Information Systems, Social aspects
Identifiers
urn:nbn:se:oru:diva-71661 (URN)
Conference
Medical Informatics Europe (MIE 2018), Gothenburg, Sweden, April 24-26, 2018
Available from: 2019-01-22 Created: 2019-01-22 Last updated: 2019-01-22Bibliographically approved
Essén, A., Scandurra, I., Gerrits, R., Humphrey, G., Johansen, M. A., Kiergegaard, P., . . . Ancker, J. S. (2018). Patient access to electronic health records: Differences across ten countries. Health Policy and Technology, 7(1), 44-56
Open this publication in new window or tab >>Patient access to electronic health records: Differences across ten countries
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2018 (English)In: Health Policy and Technology, ISSN 2211-8837, E-ISSN 2211-8845, Vol. 7, no 1, p. 44-56Article in journal (Refereed) Published
Abstract [en]

Abstract: Patient-accessible electronic health records (PAEHRs) are being implemented at international scale. Comparing policies and systems could allow countries to learn from each other to address global and nation-specific challenges. We compare national PAEHR policy (hard and soft regulation) and services in 10 countries.

Methods: PAEHR policy and system documentation was gathered from Australia, Denmark, Estonia, Finland, France, the Netherlands, New Zealand, Norway, Sweden and the United States. A basic analytic model for policy analysis was used to delimit our focus to policy content, followed by an inductive thematic analysis across countries, in which we clustered initial themes into a set of categories of PAEHR service “approaches” related to three specific content areas.

Results: Although all 10 countries ensured some patient rights to access medical records, policies and systems were highly variable, as were the technological processes arising from these. In particular, three policy areas showed great variability. Depending upon country of origin, a patient would encounter differences in: login procedures (security), access to own and other patients’ data during adolescence (user rights), and types of medical data made available to the patient (data sets).

Conclusions: Individuals encounter very different access rights to their medical data depending on where they live. Countries may be able to develop improved policies by examining how other nations have solved common problems. Harmonizing policies is also an initial step likely to be needed before cross-national PAEHRs could be possible.

Place, publisher, year, edition, pages
Elsevier, 2018
Keywords
Patient accessible electronic health records, Patient health records, Patient portal, International comparison
National Category
Information Systems, Social aspects
Identifiers
urn:nbn:se:oru:diva-63765 (URN)10.1016/j.hlpt.2017.11.003 (DOI)000429754900009 ()2-s2.0-85043591646 (Scopus ID)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare
Note

Funding Agency:

US Agency for Healthcare Research and Quality  K01 HS021531

Available from: 2018-01-03 Created: 2018-01-03 Last updated: 2018-08-13Bibliographically approved
Essén, A., Scandurra, I., Gerrits, R., Humphrey, G., Johansen, M. A., Kierkegaard, P., . . . Ancker, J. S. (2018). Patient Access to Electronic Health Records: Differences Across Ten Countries (vol 7, pg 44, 2018). Health Policy and Technology, 7(2), 224-224
Open this publication in new window or tab >>Patient Access to Electronic Health Records: Differences Across Ten Countries (vol 7, pg 44, 2018)
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2018 (English)In: Health Policy and Technology, ISSN 2211-8837, E-ISSN 2211-8845, Vol. 7, no 2, p. 224-224Article in journal (Refereed) Published
Place, publisher, year, edition, pages
Elsevier, 2018
National Category
Information Systems, Social aspects
Identifiers
urn:nbn:se:oru:diva-68152 (URN)10.1016/j.hlpt.2018.04.001 (DOI)000436912800017 ()2-s2.0-85046626945 (Scopus ID)
Available from: 2018-07-26 Created: 2018-07-26 Last updated: 2018-09-16Bibliographically approved
Moll, J., Rexhepi, H., Cajander, Å., Grünloh, C., Huvila, I., Hägglund, M., . . . Åhlfeldt, R.-M. (2018). Patients' Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden. Journal of Medical Internet Research, 20(11), Article ID e278.
Open this publication in new window or tab >>Patients' Experiences of Accessing Their Electronic Health Records: National Patient Survey in Sweden
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2018 (English)In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 20, no 11, article id e278Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Internationally, there is a movement toward providing patients a Web-based access to their electronic health records (EHRs). In Sweden, Region Uppsala was the first to introduce patient-accessible EHRs (PAEHRs) in 2012. By the summer of 2016, 17 of 21 county councils had given citizens Web-based access to their medical information. Studies on the effect of PAEHRs on the work environment of health care professionals have been conducted, but up until now, few extensive studies have been conducted regarding patients' experiences of using PAEHRs in Sweden or Europe, more generally.

OBJECTIVE: The objective of our study was to investigate patients' experiences of accessing their EHRs through the Swedish national patient portal. In this study, we have focused on describing user characteristics, usage, and attitudes toward the system.

METHODS: A national patient survey was designed, based on previous interview and survey studies with patients and health care professionals. Data were collected during a 5-month period in 2016. The survey was made available through the PAEHR system, called Journalen, in Sweden. The total number of patients that logged in and could access the survey during the study period was 423,141. In addition to descriptive statistics reporting response frequencies on Likert scale questions, Mann-Whitney tests, Kruskal-Wallis tests, and chi-square tests were used to compare answers between different county councils as well as between respondents working in health care and all other respondents.

RESULTS: Overall, 2587 users completed the survey with a response rate of 0.61% (2587/423,141). Two participants were excluded from the analysis because they had only received care in a county council that did not yet show any information in Journalen. The results showed that 62.97% (1629/2587) of respondents were women and 39.81% (1030/2587) were working or had been working in health care. In addition, 72.08% (1794/2489) of respondents used Journalen about once a month, and the main reason for use was to gain an overview of one's health status. Furthermore, respondents reported that lab results were the most important information for them to access; 68.41% (1737/2539) of respondents wanted access to new information within a day, and 96.58% (2454/2541) of users reported that they are positive toward Journalen.

CONCLUSIONS: In this study, respondents provided several important reasons for why they use Journalen and why it is important for them to be able to access information in this way-several related to patient empowerment, involvement, and security. Considering the overall positive attitude, PAEHRs seem to fill important needs for patients.

Place, publisher, year, edition, pages
JMIR Publications, 2018
Keywords
eHealth, medical records, national survey, patient portal, patient-accessible electronic health records, patients, personal health records
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:oru:diva-69993 (URN)10.2196/jmir.9492 (DOI)000450280900001 ()30389647 (PubMedID)2-s2.0-85056037728 (Scopus ID)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2016-00623Academy of Finland
Available from: 2018-11-07 Created: 2018-11-07 Last updated: 2018-11-29Bibliographically approved
Sjölinder, M., Nöu, A. A., Kolkowska, E., Johansson, L. Å., Ridderstolpe, A. & Scandurra, I. (2018). Perspectives on design of sensor based exergames targeted towards older adults. In: Jia Zhou, Gavriel Salvendy (Ed.), Human Aspects of IT for the Aged Population. Applications in Health, Assistance, and Entertainment: 4th International Conference, ITAP 2018, Held as Part of HCI International 2018, Las Vegas, NV, USA, July 15–20, 2018, Proceedings, Part II. Paper presented at 4th International Conference on Human Aspects of IT for the Aged Population (ITAP 2018), held as part of the 20th International Conference (HCI International 2018), Las Vegas, Nevada, USA, July 15-20, 2018 (pp. 395-414). Cham: Springer
Open this publication in new window or tab >>Perspectives on design of sensor based exergames targeted towards older adults
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2018 (English)In: Human Aspects of IT for the Aged Population. Applications in Health, Assistance, and Entertainment: 4th International Conference, ITAP 2018, Held as Part of HCI International 2018, Las Vegas, NV, USA, July 15–20, 2018, Proceedings, Part II / [ed] Jia Zhou, Gavriel Salvendy, Cham: Springer, 2018, p. 395-414Conference paper, Published paper (Refereed)
Abstract [en]

Serious games are an established field of study, where exergames provide a combination of conducting exercises and playing games. The aim of this work was to identify important features to include in, and design recommendations for exergames using sensor technology. The outcome of this work was two-folded. Firstly, a literature review of design guidelines with respect to older adults as users of exergames resulted in a categorized summary of design guidelines for specific target groups, e.g. people undergoing physical rehabilitation after stroke or injury or users suffering from a chronic disease. Secondly, these guidelines are discussed from various perspectives, based on insights from several years of work in the area. A general design guidelines covered by most of the literature is that exergames should provide a wide range of difficulty levels and be possible to adjust to individual needs. Insights from own work in the area highlight the importance of task and context relevant tools and devices. The result will serve as a starting point for a framework consisting of both general and domain specific design guidelines when designing sensor-based exergames for older adults.

Place, publisher, year, edition, pages
Cham: Springer, 2018
Series
Lecture Notes in Computer Science, ISSN 0302-9743, E-ISSN 1611-3349 ; 10927
Keywords
Exergames, Game-based learning, Games for health, Guidelines, Older adults, Rehabilitation, Sensor technology, Serious games, Design, Patient rehabilitation, Games for healths, Sensor technologies
National Category
Computer and Information Sciences Information Systems, Social aspects
Identifiers
urn:nbn:se:oru:diva-71649 (URN)10.1007/978-3-319-92037-5_29 (DOI)2-s2.0-85050586904 (Scopus ID)978-3-319-92036-8 (ISBN)978-3-319-92037-5 (ISBN)
Conference
4th International Conference on Human Aspects of IT for the Aged Population (ITAP 2018), held as part of the 20th International Conference (HCI International 2018), Las Vegas, Nevada, USA, July 15-20, 2018
Available from: 2019-01-22 Created: 2019-01-22 Last updated: 2019-01-22Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-2597-1079

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