Citizens Access to Health Information in National Portals in the Nordic Countries.

National eHealth portals for citizens are available in the five Nordic countries. This study describes and compares the Nordic citizen portals and identifies variations in content access and functionality. The findings suggest that availability of information and services depend on the organisation of the health system, the connection to national health information exchange platforms and incentives for providing data and services.

Trust and distrust toward online health information in nurse-patient communication and implications for eHealth literacy.

BACKGROUND: In Norwegian hospitals, patients with newly diagnosed inflammatory joint disease are offered consultations with nurses, to address health issues related to their diagnosis and treatment. This study examines how issues of trust manifest in the communication between nurses and patients in clinical encounters; of particular interest are the accounts of trust and distrust toward online health information (OHI) linked to patients' eHealth literacy. METHODS: Video-recorded observational data were collected from 16 primary nurse-patient consultations and 10 follow up consultations in a Norwegian hospital setting. Rhetorical discourse analysis was applied to examine the conversations, focusing on the rhetorical devices that were expressed by the nurses and the patients, such as justifications, contrasting, character work, and reported speech. RESULTS: The nurses acknowledged patients' references to online search activities related to health information while expressing their own reservations about OHI. The nurses explicitly and implicitly advised patients on specific eHealth literacy strategies, namely, to consult trustworthy sources, such as patient organizations; to trust the medical knowledge conveyed by health personnel; to distrust non-professional health advice online; and to avoid self-diagnosis based on health information sought on the Internet. CONCLUSIONS: Through the use of rhetorical devices, the nurses implicitly addressed eHealth literacy strategies in their communication with patients, including the importance of critically assessing the trustworthiness of health information. This complex communicative task requires a sensitivity toward patients' eHealth literacy levels.

Negotiating scientific knowledge in the development of an eHealth MOOC.

Interdisciplinary team communication in eHealth development is challenging because all disciplines have unique, intrinsic discursive practices, theories and artefacts. Due to these factors, members of interdisciplinary teams can experience problems in communication and collaboration. Through a centered focus, members can benefit individually, inspire one another, and ultimately reach a timely delivery of their common pedagogical goal(s). Using the lens of dialogism, this paper aims to identify the conceptual considerations that arose during the development of a Massive Open Online Course (MOOC) for higher education in eHealth. Methods included auto-ethnography and interdisciplinary dialogue supported by literacy artefacts, including visual material. Results yielded a visual tool for meta-assessment of team communication, and an organizing principle for topics in the MOOC. A major implication is that especially for eHealth, scientific communicative competence of experts-while establishing a common understanding-can lead to a unique and meaningful delivery of high pedagogical quality.

Qualitative Research Studies Addressing Patient-Practitioner Communication about Online Health Information.

Modern healthcare is becoming increasingly technologized, knowledge-intensive, and specialized, which has consequences for communication between patients and practitioners in clinical encounters. Health information is increasingly accessible to patients through online resources. The objective of this paper is to provide an overview of existing studies that address how patients communicate with practitioners about online health information and to identify the key topics raised in these studies. With the concept of eHealth literacy as its point of departure, this paper specifically highlights the eHealth literacy topic of how patients comprehend, appraise and communicate online health information before and during the encounter with the healthcare professionals. In the literature search, we focus on qualitative studies that consider patients' and/or practitioners' reflections on online health information. We searched PUBMED, SCOPUS and Web of Science to capture research from various fields. Sixteen studies were included that met the following criteria: Qualitative study, focus on patient-practitioner communication, eHealth literacy and online information. The results show that the vast majority of studies were based on qualitative interviews, addressing patients' and practitioners' perspectives. Key topics in studies addressing patient perspectives were: reasons for seeking online information; calibrating understanding of online information with the practitioner; and barriers to discussing online information with practitioners. Key topics raised in studies focusing on practitioners were: trust in the patient and the online health information he/she presented as well as strategies to respond to patients who referred to online health information. The review highlights the need for further qualitative studies, preferably observational studies from authentic clinical communication situations, in order to capture how patients and practitioners communicate about online health information.

Deconstructing (e)health literacy: aspects that promote and inhibit understanding of health information in breast cancer patient pathways.

Purpose Deconstructing current definitions of "health literacy (HL)" and "eHealth literacy (eHL)", into the core notion of "understanding health information (HI)", this study provides insights into what promotes and inhibits the understanding of HI for breast cancer patients during cancer patient pathways (CCP) in Norway. Methods Seven well-educated women were interviewed. Through a stepwise deductive-inductive analysis of the transcribed interviews, the following topics were identified: 1) explanations accompanied by drawings, 2) individualized knowledge-based information, 3) information processing capacity, and 4) ambiguity in medical information. Results The women's understanding of HI increased when spoken communication was accompanied by visual illustrations, which served as roadmaps throughout the CPP. Even if HI should be targeted to the patients' individual needs, some HI can be generalized if it refers to established knowledge about the health phenomena. The women described their changing mental and physical status during the CPP and how these changes influenced their understanding of HI. Conclusion The results challenge the idea that HL and eHL are fixed, stable, personal characteristics. On the contrary, HL/eHL, in this case particularly the understanding of HI, depends on the individual (temporary) physical and cognitive capacity of the patient and adaptation in the institutional and private contexts.

Shared decision-making in standardized cancer patient pathways in Norway-Narratives of patient experiences.

BACKGROUND: Cancer patient pathways (CPPs) were implemented in Norway in 2015-2017 to advance cancer diagnostics and treatment initiation. The aim of CPPs is to ensure standardized waiting times, but also to strengthen patient participation and shared decision-making. This study investigates how patients enrolled in a CPP experienced shared decision-making. METHODS: This study comprised of 19 individual semistructured interviews with patients who had been enrolled in a CPP at three hospitals in Norway. Twelve patients had breast cancer, four patients had prostate cancer and three patients had malignant melanoma. We analyzed their experiences using a narrative approach. FINDINGS: This study showed how participating in a standardized CPP provided different possibilities for shared decision-making. The patients' narratives of shared decision-making in CPPs included stories from the three cancer diagnoses through the following themes: (1) The predictable safeness of standardizations, (2) the ambivalence of making decisions and (3) opposing standardizations and pushing for action. CONCLUSION: Standardized CPPs provided patients with predictability and safety. Shared decision-making was possible when the cancer diagnoses supported preference-sensitive treatment options. Balancing standardizations with individualized care is necessary to facilitate patient participation in CPPs, and the possibility of shared decision-making needs to be discussed for each specific CPP. PATIENT OR PUBLIC CONTRIBUTION: A service user representative from the Norwegian Cancer Society participated in designing this study.

Monitoring and Benchmarking eHealth in the Nordic Countries.

The Nordic eHealth Research Network, a subgroup of the Nordic Council of Ministers eHealth group, is working on developing indicators to monitor progress in availability, use and outcome of eHealth applications in the Nordic countries. This paper reports on the consecutive analysis of National eHealth policies in the Nordic countries from 2012 to 2016. Furthermore, it discusses the consequences for the development of indicators that can measure changes in the eHealth environment arising from the policies. The main change in policies is reflected in a shift towards more stakeholder involvement and intensified focus on clinical infrastructure. This change suggests developing indicators that can monitor understandability and usability of eHealth systems, and the use and utility of shared information infrastructure from the perspective of the end-users - citizens/patients and clinicians in particular.

eHealth literacy research-Quo vadis?

The concept of electronic health (eHealth) literacy evolved from the social and information sciences and describes competencies necessary to use electronic health services. As it is a rather new topic, and as there is no current overview of the state of the art in research, it is not possible to identify research gaps. Therefore, the objective of this viewpoint article is to increase knowledge on the current state of the art of research in eHealth literacy and to identify gaps in scientific research which should be focused on by the research community in the future. The article provides a current viewpoint of the concept of eHealth literacy and related research. Gaps can be found in terms of a missing "gold standard" regarding both the definition and the measurement of eHealth literacy. Furthermore, there is a need for identifying the implications on eHealth developers, which evolve from the measurement of eHealth literacy in eHealth users. Finally, a stronger inclusion of health professionals, both in the evolving concept and in the measurement of eHealth literacy, is needed in the future.

Usability Evaluation of Clinical Guidelines on the Web Using Eye-Tracker.

Publishing clinical guidelines (GLs) on the web increases their accessibility. However, evaluating their usability and understanding how users interact with the websites has been neglected. In this study we used Tobii eye-tracker to analyse users' interaction with five commercial and public GL sites popular in Norway (four in Norwegian and one English of US origin (UpToDate)). We measured number of clicks and usage rate for search functions, task completion time, users' objective and perception of task success rate. We also measured learning effect for inexperienced users. We found a direct correlation between participant's satisfaction regarding website usability and the time spent, number of mouse clicks and use of search function to obtain the desired results. Our study showed that users' perceived success rate was not reliable and GL publishers should evaluate their website regarding presentation format, layout, navigation bar and search function.

Citizens' Access to Their Digital Health Data in Eleven Countries - A Comparative Study.

Governments around the world are actively promoting citizens electronic access to their health data as one of a number of ways to respond to the challenges of health care delivery in the 21st century. While numerous approaches have been utilized it is evident from cross-country comparisons that there are different conceptualizations of: both the expected and desired roles for citizens in the management of their own health; the benefits that will be delivered by citizen access and how these benefits should be measured and benchmarked over-time. This paper presents comparative analyses of the methods by which citizens are provided with access to their own health data across 11 countries. The paper aims to stimulate debate on electronic citizen access to health data and the challenges of measuring benefit as well as reflection on capacity of different citizens to engage with e-health.

Monitoring the Amount of Practical Use of eHealth on National Level by Use of Log Data: Lessons Learned.

This paper set out to define the lessons learned from the process of characterizing the amount of practical use of eHealth on national level by collecting and comparing log data harvested from national logs in the Nordic countries. The health systems of the Nordic countries are quite similar in structure and their eHealth strategies include similar elements, however when confronted with the specific context in the different systems it proved challenging to define a common set of indicators for monitoring the practical use of eHealth. A thorough analysis of context leading to the definitions of the indicators is the basis needed due to the complexity of the data in the national logs. A comprehensive knowledge of the structure that underlines these logs is of utmost importance when striving for collecting comparable data. Although challenging, the process of defining indicators for practical use of eHealth by data harvested trough national logs is not an impossible task, but a task that requires in depth discussions of definitions of indicators as well as a substantial insight into the architecture and content of the national databases. There is need for continuous work on these indicators to ensure their quality and thus make sure that the defined indicators can meaningfully inform eHealth policies.

Multinational surveys for monitoring eHealth policy implementations--usefulness and pitfalls.

Development of multinational variables for monitoring eHealth policy implementations is a complex task and requires multidisciplinary, knowledge-based international collaboration. Experts in an interdisciplinary workshop identified useful data and pitfalls for comparative variable development. The results are presented and discussed in this paper.

Nordic eHealth indicators: organisation of research, first results and plan for the future.

eHealth indicator and benchmarking activities are rapidly increasing nationally and internationally. The work is rarely based on a transparent methodology for indicator definition. This article describes first results of testing an indicator methodology for defining eHealth indicators, which was reported at the Medical Informatics Europe conference in 2012. The core elements of the methodology are illustrated, demonstrating validation of each of them in the context of Nordic eHealth Indicator work. Validation proved the importance of conducting each of the steps of the methodology, with several scientific as well as practical outcomes. The article is based on a report to be published by the Nordic Council of Ministers [4].