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Ethical Challenges of Evaluating Health Information Systems
Blekinge Institute of Technology, Faculty of Engineering, Department of Health.ORCID iD: 0000-0002-0316-548x
Blekinge Institute of Technology, Faculty of Engineering, Department of Health.
Blekinge Institute of Technology, Faculty of Engineering, Department of Health.ORCID iD: 0000-0003-4312-2246
Blekinge Institute of Technology, Faculty of Engineering, Department of Health.ORCID iD: 0000-0001-9870-8477
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Background

Evaluating and researching health information systems are interventions of their kind and might lead to ethical complexities and challenges. Most of those challenges are inherited from the more general fields of research and evaluation, health studies, and information systems studies. Beyond those challenges, this field has its particular traits, regarding the involved stakeholders, required values or qualities, or the process which can raise field-specific or context-specific ethical challenges.

Objectives

This paper reports and discusses some of the challenges of evaluating and researching health information systems by taking a systematic approach in finding, postulating, and analyzing them.

Method

Through a scoping review, a set of ethical challenges, regarding the evaluation and research of health information systems, were extracted. From the same set of articles, the acting entities, including stakeholders and artefacts, were identified. From a sample of seven cases of health information systems, a set of demanded impact qualities were extracted. From the literature, the evaluation stages were elicited. The acting entities, required qualities, and the evaluation stages were combined to create a three-dimensional space. The space contained the ethical challenges extracted from the scoping review and helped to postulate more items.

Results

The final list of identified items contains 20 possible ethical challenges that can be caused or raised by evaluating or researching health information systems and technologies. The ethical challenges are discussed, based on their probable stage of occurrence. The three-dimensional space and the method of populating it is proposed as an effective method in similar cases of discovering ethical challenges.

Conclusion

Evaluating or researching health information systems can raise ethical challenges, that we have identified 20 of them in this article. All the challenges were discussed, such as the actual value of evaluation, breach of privacy, risks for safety, problems with usability and accessibility, conflict of interests, problems with the informed consent, and miscommunication. The novel approach for elicitation of the ethical challenges introduced in this article might be applied in other similar studies.

National Category
Medical Ethics
Identifiers
URN: urn:nbn:se:bth-18794OAI: oai:DiVA.org:bth-18794DiVA, id: diva2:1366415
Available from: 2019-10-29 Created: 2019-10-29 Last updated: 2019-11-18Bibliographically approved
In thesis
1. Evaluating Success Factors of Health Information Systems
Open this publication in new window or tab >>Evaluating Success Factors of Health Information Systems
2019 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Health information systems are our technological response to the growing demand for health care. However, their success in their mission can be challenging due to the complexity of evaluating technological interventions in health care. In the series of studies compiled in this dissertation, we looked at the evaluation of these systems. We focused on the evaluation of factors that lead to success, where success is indicated by user satisfaction and can be induced by both intervention-specific and individual-specific factors.

Study 1 developed a method, called UVON, to elicit and organise the user-demanded qualities in the outcomes of the health information system intervention. Through the application of the UVON method in the FI-STAR project, an EU project which developed and deployed seven e-health applications in seven member countries, ten categories of quality and their subcategories were identified. These qualities formed two questionnaires, specific to the patient and health professional users. Through the questionnaires, the patients and health-professionals users evaluated and graded both the occurrence of those demanded qualities in the project outcomes and their general satisfaction.

Study 2 analysed the survey results to find out which of those ten qualities have the highest impact on satisfaction or can predict it better. Two partial least squares structural equation modelling (PLS-SEM) models were constructed, for the patient and health professionals, based on the Unified eValuation using ONtology (UVON) and survey outputs. The models showed that effectiveness is an important quality in creating satisfaction for both user groups. Besides, affordability for the health professionals and efficiency plus safety for the patients were the most influential. A satisfaction index is also introduced for simple and fast inferring of the changes in the outcome qualities.

Study 5 recruited outputs and learnings from studies 1 and 2 to design a system that partially automates the process of evaluating success factors in health information systems, making it continuous and real-time, and replacing hard-to-run surveys with automatically captured indicators and analytics.

Study 3 focused on individual-specific factors in using health information systems, particularly the technophilia personality trait. A short six-items instrument, called TechPH, was designed to measure technophilia in users, tuned for older users. The study recruited empirical data from the Swedish National Study on Aging and Care (SNAC) project. Two factors, labelled techAnxiety and techEnthusiams, are identified by the factor analysis method. A TechPH score was introduced as a scalar measurement of technophilia.

Study 4 elicited and discussed the ethical challenges of evaluating and researching health information systems. Both a scoping review and a novel systematic postulation approach were recruited to identify twenty ethical challenges. The identified ethical challenges were discussed and mapped into a three-dimensional space of evaluation stages, demanded qualities, and major involving entities (stakeholder and artefacts), which fosters further postulation of ethical challenges.

Place, publisher, year, edition, pages
Karlskrona: Blekinge Tekniska Högskola, 2019. p. 340
Series
Blekinge Institute of Technology Doctoral Dissertation Series, ISSN 1653-2090 ; 14
Keywords
Health Information Systems, Health Information Technology, Health Informatics, eHealth, Digital Health, Evaluation, Information Systems Evaluation, Health Technology Assessment, User Satisfaction, Technophilia, Evaluation and Research Ethics, System Design
National Category
Other Electrical Engineering, Electronic Engineering, Information Engineering
Identifiers
urn:nbn:se:bth-18799 (URN)978-91-7295-387-1 (ISBN)
Public defence
2019-12-17, J1640, Campus Gräsvik, Karlskrona, 14:00 (English)
Opponent
Supervisors
Available from: 2019-10-29 Created: 2019-10-29 Last updated: 2019-12-06Bibliographically approved

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Eivazzadeh, ShahryarSkär, LisaSanmartin Berglund, JohanAnderberg, Peter

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