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  • 1.
    Francke, Helena
    et al.
    Swedish School of Library and Information Science, University of Borås, Sweden.
    Gamalielsson, Jonas
    University of Skövde, School of Informatics. University of Skövde, The Informatics Research Centre.
    Lundell, Björn
    University of Skövde, School of Informatics. University of Skövde, The Informatics Research Centre.
    Institutional repositories as infrastructures for long-term preservation2017In: Information research, ISSN 1368-1613, E-ISSN 1368-1613, Vol. 22, no 2, article id 757Article in journal (Refereed)
    Abstract [en]

    Introduction. The study describes the conditions for long-term preservation of the content of the institutional repositories of Swedish higher education institutions based on an investigation of how deposited files are managed with regards to file format and how representatives of the repositories describe the functions of the repositories.

    Method. The findings are based on answers to a questionnaire completed by thirty-four institutional repository representatives (97% response rate).

    Analysis. Questionnaire answers were analysed through descriptive statistics and qualitative coding. The concept of information infrastructures was used to analytically discuss repository work.

    Results. Visibility and access to content were considered to be the most important functions of the repositories, but long-term preservation was also considered important for publications and student theses. Whereas a majority of repositories had some form of guidelines for which file formats were accepted, very few considered whether or not file formats constitute open standards. This can have consequences for the long-term sustainability and access of the content deposited in the repositories.

    Conclusion. The study contributes to the discussion about the sustainability of research publications and data in the repositories by pointing to the potential difficulties involved for long-term preservation and access when there is little focus on and awareness of open file formats.

  • 2.
    Huvila, Isto
    et al.
    Department of ALM (Archives, Library & Information, Museum & Cultural Heritage Studies), Uppsala University, Sweden.
    Daniels, Mats
    Department of Information Technology, Uppsala University, Uppsala, Sweden.
    Cajander, Åsa
    Department of Information Technology, Uppsala University, Uppsala, Sweden.
    Åhlfeldt, Rose-Mharie
    University of Skövde, School of Informatics. University of Skövde, The Informatics Research Centre.
    Patients reading their medical records: Differences in experiences and attitudes between regular and inexperienced readers2016In: Information research, ISSN 1368-1613, E-ISSN 1368-1613, Vol. 21, no 1, article id 706Article in journal (Refereed)
    Abstract [en]

    Introduction. We report results of a study of how ordering and reading of printouts of medical records by regular and inexperienced readers relate to how the records are used, to the health information practices of patients, and to their expectations of the usefulness of new e-Health services and online access to medical records. Method. The study is based on a combined postal- and Web-survey of a simple random sample of 1000 patients who ordered a paper copy of their medical records from the Uppsala county council (Sweden) with a final analysed sample of 354 returned questionnaires. Analysis. The data were analysed using SPSS 21.0 using descriptive statistics, one-way analysis of variation (ANOVA) using Tamhane’s T2 test, chi-squared tests and logistic regression analysis. Results. The analysis shows that individuals who had ordered a copy of their medical records in the past perceive their usefulness in broader terms than first-timers. The regular readers are also most concerned about their health and the quality of care. Conclusions. It seems that in addition to certain demographic factors, many of the variations in the data can be explained in terms of adaptive structuration theory. This is a result of a parallel structuration of patients, medical records and the paper-based and online technologies of access, and consequently how patients perceive records and the different methods of accessing and using them.

  • 3.
    Huvila, Isto
    et al.
    Uppsala Univ, Dept ALM, Informat Studies, Sweden.
    Moll, Jonas
    Uppsala Univ, Dept Informat Technol, Sweden.
    Enwald, Heidi
    Univ Oulu, Informat Studies, Finland.
    Hirvonen, Noora
    Univ Oulu, Informat Studies, Finland.
    Åhlfeldt, Rose-Mharie
    University of Skövde, School of Informatics. University of Skövde, The Informatics Research Centre.
    Cajander, Åsa
    Uppsala Univ, Dept Informat Technol, Human Comp Interact, Sweden.
    Age-related differences in seeking clarification to understand medical record information2019In: Information research, ISSN 1368-1613, E-ISSN 1368-1613, Vol. 24, no 1, article id isic1834Article in journal (Refereed)
    Abstract [en]

    Introduction Patient accessible electronic health records can be used to inform and empower patients. However, their use may require complementary information seeking since they can be difficult to interpret. So far, relatively little is known of the information seeking that takes place in connection to health record use, and especially the way it varies in different age groups. A better understanding of patients' preferences of where and how to find explanatory information provides valuable input for the development of health information provision and counselling services. Method. The analysis is based on the results of a national survey of Swedish individuals (N=1,411) who had used a national patient accessible electronic health record system (Journalen). Analysis. The data were analysed in SPSS 24.0 using Kruskal-Wallis tests for detecting groupwise differences and Jonckheere-Terpstra tests for discovering age-related trends in the data. Findings. Older patients were more likely to use a telephone and younger patients to use socia l contacts to ask for clarification. Generally, older adults born between 1946-1960 appear as passive information seekers. Conclusion. Age gro ups differ in their preferences on how to seek clarification, which underlines the importance of a better understanding of individual differences in delivering not only technically but also intellectually accessible health information. Calling by telephone could be a habit of present older generations whereas, to a degree, searching information online could be a comparable habit of current younger generations.

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