Högskolan i Skövde

In order to identify needed skills and competencies for privacy and security, we propose a systematic process that maps privacy and security threats to related controls that are required to prevent, detect or remove such threats. This work suggests how to apply the process, while discussing how games and simulations can be used both to develop the desired behavior and to monitor the current competency level.

There is a growing understanding that privacy is an essential component of security. In order to decrease the probability of having data breaches, the design of information systems,  processes  and  architectures  should  incorporate considerations  related  to  both  privacy  and  security.  This incorporation may benefit from the offering of appropriate training. In this way, this paper intends to discuss how to better offer training while considering new developments that involve both multimedia production and the “gamification” of training. The paper suggests the use in conjunction of two frameworks: the EduPMO Framework, useful for the management of large scale projects  that  may  involve  a  consortium  of  organizations developing multimedia for the offering of training, and the Game Development Framework, useful for the identification of the main components of the serious game for training on privacy by design to be developed as part of the training offering.

InfoSec policies are considered a key mechanism in information security, and most organizations have one. However, the large majority of security policy research has focused on what policies should include rather than how they are accomplished in practice. To contribute to overcoming the lack of knowledge regarding this crucial aspect, this paper investigates information security policies based on what underlying approaches information classification practices are built on and the perceived ease of turning the policy into practice. To do so, a survey was sent to 284 Swedish government agencies, and 80 of their internal policies were collected as data. The data were analyzed both qualitatively, and qualitatively. The results show that information classification adoption rates are low despite being mandatory and that agencies are struggling in closing the gap between standards and practice. Furthermore, the results also show that information classification policies need to be more specific and give more actionable advice regarding, e.g., how information life-cycle management is included in practice, and where the responsibility for classification is put in the organization.

Purpose: The purpose of this paper is to develop a method for information classification. The proposed method draws on established standards, such as the ISO/IEC 27002 and information classification practices. The long-term goal of the method is to decrease the subjective judgement in the implementation of information classification in organisations, which can lead to information security breaches because the information is under- or over-classified. Design/methodology/approach: The results are based on a design science research approach, implemented as five iterations spanning the years 2013 to 2019. Findings: The paper presents a method for information classification and the design principles underpinning the method. The empirical demonstration shows that senior and novice information security managers perceive the method as a useful tool for classifying information assets in an organisation. Research limitations/implications: Existing research has, to a limited extent, provided extensive advice on how to approach information classification in organisations systematically. The method presented in this paper can act as a starting point for further research in this area, aiming at decreasing subjectivity in the information classification process. Additional research is needed to fully validate the proposed method for information classification and its potential to reduce the subjective judgement. Practical implications: The research contributes to practice by offering a method for information classification. It provides a hands-on-tool for how to implement an information classification process. Besides, this research proves that it is possible to devise a method to support information classification. This is important, because, even if an organisation chooses not to adopt the proposed method, the very fact that this method has proved useful should encourage any similar endeavour. Originality/value: The proposed method offers a detailed and well-elaborated tool for information classification. The method is generic and adaptable, depending on organisational needs.

This paper presents a comprehensive systematic literature review of information classification (IC) enablers. We propose a classification based on the well-known levels of management: strategic, tactical and operational. The results reveal that a large number of enablers could be adopted to increase the applicability of IC in organizations. The results also indicate that there is not one single enabler solving the problem, but rather several enablers can influence the adoption.

This paper presents an extensive systematic literature review with the aim of identifying and classifying issues in the information classification process. The classification selected uses human and organizational factors for grouping the identified issues. The results reveal that policy-related issues are most commonly described, but not necessarily the most crucial ones. Furthermore, gaps in the research field are identified in order to outline paths for further research.

Bring Your Own Device (BYOD) is an emerging research area focusing on the organisational adoption of (primarily mobile) devices used for both private and work purposes. There are many information security related problems concerning the use of BYOD and it should therefore be considered an issue of strategic importance for senior managers. This paper presents a systematic literature analysis using a BYOD strategic management framework to assess developing research trends. The analysis reveals early work in the analysis and design aspects of BYOD strategies, but a lack of research in operationalizing (planning, implementation and evaluating) strategy – the action phase. The resulting research agenda identifies twelve management issues for further research and four overall research directions that may stimulate future research.

Patient-Accessible Electronic Health Records (PAEHR) is particularly controversial in mental healthcare. We aim to explore if there is any association between patients with mental health conditions and the experience of someone demanding access to their PAEHR. A chi-square test showed a significant association between group belonging and experiences of someone demanding access to the PAEHR.

Patient-Accessible Electronic Health Records (PAEHR) are particularly disputed in mental healthcare. We aim to explore if there is any association between patients having a mental health condition and someone unwanted seeing their PAEHR. A chi-square test showed a statistically significant association between group belonging and experiences of someone unwanted seeing their PAEHR.

Patient Empowerment (PE) allows patients to be more active in managing their own health and quality of life. The aim of this paper is to analyze how trust affects PE, in the context of healthcare information systems. An interview study was conducted concerning patients’ online access to electronic healthcare records. Results show that PE requires that patients trust the information that healthcare professionals and their electronic health record systems provide. Without trust, patients cannot control their own participation in relation to the healthcare professionals. This may result in a diminished ability to participate in the healthcare processes regarding their own care. Practical implications include acquired knowledge about and awareness of how trust influences PE, with particular emphasis on healthcare professionals. A trust model is presented that illustrates the trustor-trustee dimensions of PE. This model has both theoretical and practical implications in its illustration of how trust and PE connect.  

Background: Patients’ online record access (ORA) enables patients to read and use their health data through online digital solutions. One such solution, patient-accessible electronic health records (PAEHRs) have been implemented in Estonia, Finland, Norway, and Sweden. While accumulated research has pointed to many potential benefits of ORA, its application in mental healthcare (MHC) continues to be contested. The present study aimed to describe MHC users’ overall experiences with national PAEHR services. Methods: The study analysed the MHC-part of the NORDeHEALTH 2022 Patient Survey, a large-scale multi-country survey. The survey consisted of 45 questions, including demographic variables and questions related to users’ experiences with ORA. We focused on the questions concerning positive experiences (benefits), negative experiences (errors, omissions, offence), and breaches of security and privacy. Participants were included in this analysis if they reported receiving mental healthcare within the past two years. Descriptive statistics were used to summarise data, and percentages were calculated on available data. Results: 6,157 respondents were included. In line with previous research, almost half (45%) reported very positive experiences with ORA. A majority in each country also reported improved trust (at least 69%) and communication (at least 71%) with healthcare providers. One-third (29.5%) reported very negative experiences with ORA. In total, half of the respondents (47.9%) found errors and a third (35.5%) found omissions in their medical documentation. One-third (34.8%) of all respondents also reported being offended by the content. When errors or omissions were identified, about half (46.5%) reported that they took no action. There seems to be differences in how patients experience errors, omissions, and missing information between the countries. A small proportion reported instances where family or others demanded access to their records (3.1%), and about one in ten (10.7%) noted that unauthorised individuals had seen their health information. Conclusions: Overall, MHC patients reported more positive experiences than negative, but a large portion of respondents reported problems with the content of the PAEHR. Further research on best practice in implementation of ORA in MHC is therefore needed, to ensure that all patients may reap the benefits while limiting potential negative consequences. 

Purpose: Ensuring security of online health records and patients' perceptions of security are concerns in adolescent healthcare. Little is known about adolescents' perceptions about healthcare's ability to protect online health records. This article explores adolescents' perspectives on security and privacy of their online health records, potential differences based on gender and health, attitudes to sharing information, and perceptions of what constitutes sensitive information. Methods: This study included a subset of items from a national online patient survey conducted in Sweden (January-February 2022), focusing on respondents aged 15–19 years. Gender and health status differences were calculated using the Kruskal-Wallis test. Results: Of 218 adolescent respondents (77.1% female), a minority had security and privacy concerns. A notable proportion (41.3%) wished to control who could see their records, and those who reported better perceived health were more likely to want to manage access to their electronic health record (H = 13.569, p = .009). Most had not experienced unauthorized access to their records (75.2%) and had never shared health information on other online applications (85.8%). More than half (56.0%) perceived some information as sensitive, where mental health was the most common (76.0%). Most felt that reading their notes improved their trust for their healthcare professional (65.6%) and supported better communication with healthcare professionals (66.5%). Discussion: In this national survey, adolescents generally reported few concerns about patient portals. Findings emphasize the need for security and privacy protection and to empower adolescents with greater control over access to their health information housed in electronic health record systems. 

Better knowledge of the habits and preferences of patients helps one understand why and how patients might need or want to access health services online and offline. Such knowledge provides a basis for designing systems for providing complementary health information. This article discusses how patients' conceptualizations of their health-information-related preferences, motivations, and needs are linked to the perceived role of medical records as an informational artifact. We identified seven subject positions: (P1) Hypothetically positive to e-health services generally, (P2) Positive to reading medical records due to implications, (P3) Positive to all Internet use including medical records online, (P4) Distrustful and wants to be in control of health treatment, (P5) Worried about health, (P6) Wants communication with health care professionals, and (P7) Do not understand their medical record. These subject positions can explain the worry and enthusiasm documented in earlier literature. The diversity of subject positions implies that health care information services should be planned with different subject positions in mind rather than a simple demographic group. Special attention needs to be given to finding flexible solutions that address the opportunities and worries of the identified subject positions.

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.

To address the research gap on age-based differences in health information literacy (HIL), we investigated how younger (born 1960–) and older adults (1946–1960), and elderly citizens (–1945) differed from each other by their HIL competencies. Data were collected with an online survey of patients using the Swedish national electronic health record system. Altogether, 2,587 users responded. One-way ANOVA with post hoc tests revealed several differences between the groups: younger adults were less likely to value health information than older adults; older adults and elderly were least likely to compare information from multiple sources and had trouble in determining health information needs; older adults were most likely to have trouble understanding health terminology and the elderly to have difficulties in understanding medicinal package labels. The study shows that HIL is not necessarily improving or declining but adapting to challenges of advanced age. © 2019, Springer Nature Switzerland AG.

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.

Objective: The current understanding of the breadth of individual differences in how eHealth technologies are perceived as useful for different purposes is incomprehensive. The aim/purpose of the study is to improve the understanding of diverse perceptions of the usefulness of technologies by exploring older adults’ use of their patient-accessible electronic health records (PAEHRs).

Methods: The study applies and extends Affordance Theory based on an empirical analysis of data from the NORDeHEALTH 2022 Patient Survey on attitudes toward PAEHR in Norway, Sweden, Finland, and Estonia. Responses from 3964 participants in Sweden, aged 65 + years were analysed. Data included demographics and agreement ratings to reasons for using PAEHR. To analyse variation in the reasons for using PAEHR, group comparisons were conducted based on gender (male/female), age group (65–74, 75–84 and 85+) and earlier encouragement to use PAEHR.

Results: Overall, the findings suggest that PAEHRs have multiple parallel affordance trajectories and affordance potencies that actualise differently depending on needs. The top reasons, pointing to both orientational and goal-oriented affordances for using PAEHR, were improving understanding of health issues, getting an overview of medical history/treatment and ensuring understanding of what the doctor said. Men reported more often sharing information with relatives or friends as a reason to access PAEHR. Women were more inclined, albeit similarly to men less frequently, to read their PAEHR for detecting errors. Age had little influence on reasons for using PAEHR.

Conclusions: The study applies and extends Affordance Theory in the context of older adults’ PAEHR use based on findings from the largest national investigation of reasons for older users to access PAEHR in Sweden demonstrating the applicability of the theory in improving the understanding of the diversity of individual perceptions on eHealth technologies. 

The Nordic countries are, together with the United States, forerunners in online record access (ORA), which has now become widespread. The importance of accessible and structured health data has also been highlighted by policy makers internationally. To ensure the full realization of ORA’s potential in the short and long term, there is a pressing need to study ORA from a cross-disciplinary, clinical, humanistic, and social sciences perspective that looks beyond strictly technical aspects. In this viewpoint paper, we explore the policy changes in the European Health Data Space (EHDS) proposal to advance ORA across the European Union, informed by our research in a Nordic-led project that carries out the first of its kind, large-scale international investigation of patients’ ORA—NORDeHEALTH (Nordic eHealth for Patients: Benchmarking and Developing for the Future). We argue that the EHDS proposal will pave the way for patients to access and control third-party access to their electronic health records. In our analysis of the proposal, we have identified five key principles for ORA: (1) the right to access, (2) proxy access, (3) patient input of their own data, (4) error and omission rectification, and (5) access control. ORA implementation today is fragmented throughout Europe, and the EHDS proposal aims to ensure all European citizens have equal online access to their health data. However, we argue that in order to implement the EHDS, we need more research evidence on the key ORA principles we have identified in our analysis. Results from the NORDeHEALTH project provide some of that evidence, but we have also identified important knowledge gaps that still need further exploration.

BACKGROUND: Although many surveys have been conducted on patients accessing their own health records in recent years, there is a limited amount of nationwide cross-country data available on patients' views and preferences. To address this gap, an international survey of patient users was conducted in the Nordic eHealth project, NORDeHEALTH. OBJECTIVE: We aimed to investigate the sociodemographic characteristics and experiences of patients who accessed their electronic health records (EHRs) through national patient portals in Norway, Sweden, Finland, and Estonia. METHODS: A cross-sectional web-based survey was distributed using the national online health portals. The target participants were patients who accessed the national patient portals at the start of 2022 and who were aged ≥15 years. The survey included a mixture of close-ended and free-text questions about participant sociodemographics, usability experience, experiences with health care and the EHR, reasons for reading health records online, experience with errors, omissions and offense, opinions about security and privacy, and the usefulness of portal functions. In this paper, we summarized the data on participant demographics, past experience with health care, and the patient portal through descriptive statistics. RESULTS: In total, 29,334 users completed the survey, of which 9503 (32.40%) were from Norway, 13,008 (44.35%) from Sweden, 4713 (16.07%) from Finland, and 2104 (7.17%) from Estonia. National samples were comparable according to reported gender, with about two-thirds identifying as women (19,904/29,302, 67.93%). Age distributions were similar across the countries, but Finland had older users while Estonia had younger users. The highest attained education and presence of health care education varied among the national samples. In all 4 countries, patients most commonly rated their health as "fair" (11,279/29,302, 38.48%). In Estonia, participants were more often inclined to rate their health positively, whereas Norway and Sweden had the highest proportion of negative health ratings. Across the whole sample, most patients received some care in the last 2 years (25,318/29,254, 86.55%). Mental health care was more common (6214/29,254, 21.24%) than oncological care (3664/29,254, 12.52%). Overall, most patients had accessed their health record "2 to 9 times" (11,546/29,306, 39.4%), with the most frequent users residing in Sweden, where about one-third of patients accessed it "more than 20 times" (4571/13,008, 35.14%). CONCLUSIONS: This is the first large-scale international survey to compare patient users' sociodemographics and experiences with accessing their EHRs. Although the countries are in close geographic proximity and demonstrate similar advancements in giving their residents online records access, patient users in this survey differed. We will continue to investigate patients' experiences and opinions about national patient-accessible EHRs through focused analyses of the national and combined data sets from the NORDeHEALTH 2022 Patient Survey. 

In Sweden, and internationally, there is an ongoing debate about the effects of national implementations of Patient Accessible Electronic Health Records (PAEHRs). The purpose of this paper was to describe the current situation in Sweden and compare this with the expectations on reasonable waiting time for information access of users of the Swedish PAEHR. Data were collected from publicly available resources regarding current implementation in the 21 county councils, contrasted with patient experiences, gathered from a national online survey. The results indicate that patients have high expectations on immediate access to information, while this varies greatly in implementation across Sweden.

In this workshop, examples and experiences from ongoing work todevelop and implement eHealth services for citizens will be provided. Challengesand potential solutions based on different international contexts will be discussedin interactive sessions. The results will form a report suggesting strategies andactivities that could provide potential solutions to the identified challenges.

Community Health Workers (CHWs) have been usingMobile Health Data Collection Systems (MDCSs) for supportingthe delivery of primary healthcare and carrying out public healthsurveys, feeding national-level databases with families’ personaldata. Such systems are used for public surveillance and to managesensitive data (i.e., health data), so addressing the privacy issuesis crucial for successfully deploying MDCSs. In this paper wepresent a comprehensive privacy threat analysis for MDCSs,discuss the privacy challenges and provide recommendationsthat are specially useful to health managers and developers. Weground our analysis on a large-scale MDCS used for primarycare (GeoHealth) and a well-known Privacy Impact Assessment(PIA) methodology. The threat analysis is based on a compilationof relevant privacy threats from the literature as well as brainstormingsessions with privacy and security experts. Among themain findings, we observe that existing MDCSs do not employadequate controls for achieving transparency and interveinability.Thus, threatening fundamental privacy principles regarded asdata quality, right to access and right to object. Furthermore, itis noticeable that although there has been significant research todeal with data security issues, the attention with privacy in itsmultiple dimensions is prominently lacking.

Background: Community-based primary care focuses on health promotion, awareness raising, and illnesses treatment and prevention in individuals, groups, and communities. Community Health Workers (CHWs) are the leading actors in such programs, helping to bridge the gap between the population and the health system. Many mobile health (mHealth) initiatives have been undertaken to empower CHWs and improve the data collection process in the primary care, replacing archaic paper-based approaches. A special category of mHealth apps, known as mHealth Data Collection Systems (MDCSs), is often used for such tasks. These systems process highly sensitive personal health data of entire communities so that a careful consideration about privacy is paramount for any successful deployment. However, the mHealth literature still lacks methodologically rigorous analyses for privacy and data protection.

Objective: In this paper, a Privacy Impact Assessment (PIA) for MDCSs is presented, providing a systematic identification and evaluation of potential privacy risks, particularly emphasizing controls and mitigation strategies to handle negative privacy impacts.

Methods: The privacy analysis follows a systematic methodology for PIAs. As a case study, we adopt the GeoHealth system, a large-scale MDCS used by CHWs in the Family Health Strategy, the Brazilian program for delivering community-based primary care. All the PIA steps were taken on the basis of discussions among the researchers (privacy and security experts). The identification of threats and controls was decided particularly on the basis of literature reviews and working group meetings among the group. Moreover, we also received feedback from specialists in primary care and software developers of other similar MDCSs in Brazil.

Results: The GeoHealth PIA is based on 8 Privacy Principles and 26 Privacy Targets derived from the European General Data Protection Regulation. Associated with that, 22 threat groups with a total of 97 subthreats and 41 recommended controls were identified. Among the main findings, we observed that privacy principles can be enhanced on existing MDCSs with controls for managing consent, transparency, intervenability, and data minimization.

Conclusions: Although there has been significant research that deals with data security issues, attention to privacy in its multiple dimensions is still lacking for MDCSs in general. New systems have the opportunity to incorporate privacy and data protection by design. Existing systems will have to address their privacy issues to comply with new and upcoming data protection regulations. However, further research is still needed to identify feasible and cost-effective solutions.

Community health workers in primary care programs increasingly use Mobile Health Data Collection Systems (MDCSs) to report their activities and conduct health surveys, replacing paper-based approaches. The mHealth systems are inherently privacy invasive, thus informing individuals and obtaining their consent is important to protect their rights to privacy. In this paper, we introduce an e-Consent tool tailored for MDCSs. It is developed based on the requirement analysis of consent management for data privacy and built upon the solutions of Participant-Centered Consent toolkit and Consent Receipt specification. The e-Consent solution has been evaluated in a usability study. The study results show that the design is useful for informing individuals on the nature of data processing, allowing them to make informed decisions.

The healthcare domain is in urgent need for solutions to making clinical and administrative systems, possibly belonging to different healthcare units, interoperable and hence making them deliver timely and correct information as needed in particular situations. Process manager technology allows making all actors (humans or information systems) involved in healthcare processes communicate along these processes. This paper argues that process manager technology is essential for achieving interoperability in healthcare, but that some serious problems need to be overcome to realise its full potential. A number of design solutions to address these problems are proposed.

Enterprise systems interoperability is impeded by the lack of a cohesive, integrated perspective on non-functional aspects (NFA). We propose to respond to the fragmentation in NFA research by supporting a shared, common understanding. For this purpose:- first, we propose a common NFA ontology, which generalizes and integrates the different non-functional aspects under a common top-level ontology. Second, we introduce a series of specialized ontologies on specific non-functional aspects, such as trust, risk, privacy, threat and misuse. By fostering a consensual and shared view of the non-functional aspects domain, we aim to move closer to enhancing semantic enterprise interoperability. This shared perspective on what non-functional aspects are and how they relate to the other 'functional' aspects of enterprise systems, is the key towards enterprise interoperability.

Aims: To explore on how patients experience the information exchange with healthcare organizations and how this relates to the six areas that constitute good quality care.Method: A qualitative approach inspired by Grounded Theory was adopted. Seven interviews with patients were carried out in the homes of patients.Conclusion: Healthcare does not always meet the requirements of Health and Medical Services Act with regard to good quality health. An effective exchange of information between health professionals and patients was found as a key issue for creating the conditions for good quality care.

Background: The NORDeHEALTH project studies patient-accessible electronic health records (PAEHRs) in Estonia, Finland, Norway, and Sweden. Such country comparisons require an analysis of the sociotechnical context of these services. Although sociotechnical analyses of PAEHR services have been carried out in the past, a framework specifically tailored to in-depth cross-country analysis has not been developed. Objective: This study aims to develop and evaluate a method for a sociotechnical analysis of PAEHRs that advances a framework for sociotechnical analysis of eHealth solutions first presented by Sittig and Singh. This first article in a series presents the development of the method and a cross-country comparison of the contextual factors that enable PAEHR access and use. Methods: The dimensions of the framework for sociotechnical analysis were thoroughly discussed and extended in a series of workshops with international stakeholders, all being eHealth researchers focusing on PAEHRs. All countries were represented in the working group to make sure that important national perspectives were covered. A spreadsheet with relevant questions related to the studied services and the various dimensions of the sociotechnical framework was constructed and distributed to the 4 participating countries, and the project participants researched various national sources to provide the relevant data for the comparisons in the 10 sociotechnical dimensions. Results: In total, 3 dimensions were added to the methodology of Sittig and Singh to separate clinical content from features and functions of PAEHRs and demonstrate basic characteristics of the different countries regarding national and regional steering of health care and information and communications technology developments. The final framework contained the following dimensions: metadata; hardware and software computing infrastructure; features and functions; clinical content shared with patients; human-computer interface; people; workflow and communication; the health care organization’s internal policies, procedures, and culture; national rules, regulations, and incentives; system measurement and monitoring; and health care system context. The dimensions added during the study mostly concerned background information needed for cross-country comparisons in particular. Several similarities were identified among the compared countries, especially regarding hardware and software computing infrastructure. All countries had, for example, one national access point, and patients are provided a PAEHR automatically. Most of the differences could be identified in the health care system context dimension. One important difference concerned the governing of information and communications technology development, where different levels (state, region, and municipality) were responsible in different countries. Conclusions: This is the first large-scale international sociotechnical analysis of services for patients to access their electronic health records; this study compared services in Estonia, Finland, Norway, and Sweden. A methodology for such an analysis was developed and is presented to enable comparison studies in other national contexts to enable future implementations and evaluations of PAEHRs. 

This study explores patients’ perspectives on sharing their personal health data, which is traditionally shared through discussions with peers and relatives. However, other possibilities for sharing have emerged through the introduction of online services such as Patient Accessible Electronic Health Records (PAEHR). In this article, we investigate strategies that patients adopt in sharing their PAEHR. Data were collected through a survey with 2587 patients and through 15 semi-structured interviews with cancer patients. Results show that surprisingly few patients share their information, and that older patients and patients with lower educational levels share more frequently. A large majority of patients trust the security of the system when sharing despite the high sensitivity of health information. Finally, we discuss the design implications addressing identified problems when sharing PAEHR, as well as security and privacy issues connected to sharing.

Healthcare often involves cooperation between several actors: primary care, hospitals, relatives etc. For elderly patients living in their own homes, integration with social care is also mandatory, as home healthcare teams andsocial care workers contribute to a unified “homecare”. Correct and updated information about patients, the treatment provided, and planned activities is crucial for successful cooperation in such cases, yet ICT tools for collaboration between all actors involved are not commonly used. Initial findings from one project to develop a process management tool for this type of situation (treatment of leg ulcers) are discussed from a multiactor economic perspective. It is argued that evaluations should identify the consequences for each among the most important collaborating organisations. Such evaluations could be used to predict the impact of the proposed changes, and to redesign projects accordingly. Such evaluations may also be used to define what could be achieved with process changes in general, aside from direct process related effects that can only be assessed when new ICT tools are actually introduced.

This paper presents a method based on process manager technology for making all actors (humans or information systems) involved in healthcare processes to communicate along these processes. The method utilizes straightforward and yet executable process diagrams. Furthermore, the paper suggests a number of additional features to the method that may cater for the representation of security and quality requirements, as well as enhanced efficiency of the healthcare processes.

To be efficient and patient focused, healthcare units need to be process oriented and integrated with the processes and IT systems of other healthcare units. A process manager facilitates integration of different systems by using graphical and executable process models. The process manager also communicates directly with healthcare personnel via desktop computers and mobile devices. This article reports on a Swedish project where a prototype system was developed and tested with several healthcare units. The experience shows several advantages and opportunities. For example, current information about patients can be transferred automatically between healthcare units; resource intensive manual tasks can be replaced with automated tasks; and long-term process monitoring and quality assessment can be enabled. However, introducing a process manager requires attention to issues of security, ethics and legality. Healthcare units may also show differences in security awareness and IT maturity, which could obstruct the introduction of a process manager.

I tre år har patienter i landstinget i Uppsala kunnat läsa sina journaler via nätet och haft tillgång till en rad eHälsotjänster såsom att följa remisser, se läkemedelslista och den lista med namn på vårdpersonal som använt deras journal. Att patienter skulle kunna fara illa när de får svåra besked via sin journal på nätet var en av många farhågor som Uppsala Allmänna Läkarföreningen (UAL) hade när projektet med direktåtkomst sjösattes hösten 2012 inom ramen för ett EU-projekt, SUSTAINS. Andra farhågor som UAL hade gällde att patienterna inte skulle förstå texten i journalen, och att de skulle bli oroade utan att ha möjlighet att fråga någon vårdpersonal om t ex provsvar. För att ta reda på patientens upplevelser av och förväntningar på e-tjänsten ”Min journal” genomfördes en intervjustudie med 30 cancerpatienter på Onkologen, Akademiska sjukhuset i Uppsala som en del av det Vinnovafinansierade DOME-projektet. Resultatet av intervjuerna ger en bra bild av varför patienter läser sin journal och använder eHälsotjänster samt varför man väljer att inte läsa sin journal. Bland annat framgår av resultatet att en stor majoritet av patienterna är positiva till tjänsten och upplever att det finns en nytta med att kunna läsa sin journal. Bland annat tycks tillgången till journalen förbättra möjligheten till förberedelser inför ett läkarbesök och öka tryggheten och delaktigheten i den egna vården. Även de patienter som inte har erfarenheter av att läsa sin journal via nätet ser en viktig nytta med tjänsten. Vidare upplever några patienter en oro över att obehöriga ska få tillgång till informationen. Det finns dock en underliggande förväntan hos samtliga patienter att e-tjänsten håller hög säkerhetsnivå. Av studien kan man dra slutsatsen att det finns ett behov av att studera hur e-tjänsten ”Min journal” kan länkas med övriga eHälsotjänster som ett led i att effektivisera tillgången till information.

Patients’ online access to their EHR together with the rapid proliferation of medical information on the Internet has changed how patients use information to learn about their health. Patients’ tendency to turn to the Internet to find information about their health and care is well-documented. However, little is known about patients’ information seeking behavior when using online EHRs. By using information horizons as an analytical tool this paper aims to investigate the information behavior of cancer patients who have chosen to view their EHRs (readers) and to those who have not made that option (non-readers). Thirty interviews were conducted with patients. Based on information horizons, it seems that non-reading is associated with living in a narrower information world in comparison to readers. The findings do not suggest that the smallness would be a result of active avoidance of information, or that it would be counterproductive for the patients. The findings suggest, however, that EHRs would benefit from comprehensive linking to authoritative health information sources to help users to understand their contents. In parallel, healthcare professionals should be more aware of their personal role as a key source of health information to those who choose not to read their EHRs. 

Patients’ online access to their EHR together with the rapid proliferation of medical information on theInternet has changed the way patients use the information to learn about their health. It is welldocumented that patients often turn to the Internet to find information about their health and care.However, little is known about patients´ information seeking behaviour when using online EHRs. Byusing information horizons as an analytical tool this paper aims to investigate the informationbehaviour of cancer patients who have chosen to view their EHRs (readers) and to those who havenot made that option (non-readers). Thirty interviews were conducted with patients. Based oninformation horizons, it seems that non-reading is associated with living in a narrower informationworld in comparison to readers. The findings do not suggest that the smallness would be a result of anactive avoidance of information, or that it would be counterproductive for the patients.

Despite the fact that patient accessible electronic health records (PAEHRs) have been around for many years in several countries, there is a lack of research investigating patient’s preferences for receiving bad news, including through PAEHRs. Little is also known about the characteristics of the patients who prefer to receive bad news through the PAEHR in terms of, for example medical diagnosis, age and educational level. This study, based on a national patient survey in Sweden (N = 2587), investigated this. Results show that, generally, receiving bad news by reading in the PAEHR is still among the least preferred options. Additionally, a higher proportion of men want to receive bad news in the PAEHR compared to women (p = 0.001), and the same goes for those who are not working/have worked in healthcare (p = 0.007). An effect of disease groups was also found, showing that diabetes patients in particular, want to receive bad news through the PAEHR. 

Despite the fact that patient accessible electronic health records (PAEHRs) have been around for manyyears in several countries, there is a lack of research investigating patient´ preferences for receiving badnews, including through PAEHRs. Little is also known about the characteristics of the patients who preferto receive bad news through the PAEHR in terms of e.g. medical diagnosis, age and educational level.This study, based on a national patient survey in Sweden (N=2587), investigated this. Results showthat, generally, receiving bad news by reading in the PAEHR is still among the least preferred options.Additionally, a higher proportion of men want to receive bad news in the PAEHR compared to women(p=0.001), and the same goes for those who are not working/have worked in healthcare (p=0.007). Aneffect of disease groups was also found, showing that diabetes patients in particular, want to receivebad news through the PAEHR.

Patients’ access to their online medical records serves as one of the cornerstones in the efforts to increase patient engagement and improve healthcare outcomes. The aim of this paper is to provide in-depth understanding of cancer patients’ attitudes and experiences of online medical records, as well as an increased understanding of the complexities of developing and launching e-Health services. The study result confirms that online access can help patients prepare for doctor visits and to understand their medical issues. In contrast to the fears of many physicians the study shows that online access to medical records did not generate substantial anxiety, concerns or increased phone calls to the hospital

Patients’ access to their online medical records serves as one of the cornerstones in the efforts to increase patient engagement and improve healthcare outcomes. The aim of this paper is therefore to provide in-depth understanding of cancer patients’ attitudes and experiences of online medical records, as well as an increased understanding of the complexities of developing and launching eHealth services. The study result confirms that online access can help patients prepare for doctor visits and to understand their medical issues. In contrast to the fears of many physicians the study shows that online access to medical records did not generate substantial anxiety, concerns or increased phone calls to the hospital.

Healthcare processes require the cooperation of different healthcare providers and medical disciplines. In such an environment, the quality and safety of care rely heavily on the ability to exchange information from one software to another, and from one person to another. However, information systems that support a seamless flow of information along healthcare processes are not broadly used in healthcare environments. Usually, healthcare organizations have their own autonomously developed information systems that do not support the cooperation of different organizational units and medical disciplines. This has led to the fragmentation of the patients’ information in proprietary heterogeneous systems across healthcare organizations. The aim of this paper is to: (1) explore how healthcare practitioners´ in Sweden experience information system support in their daily work activities, and (2) present and illustrate how key design principles of a process support system prototype can support healthcare practitioners in their work practice. An important conclusion from this research is that a process support as the one described in this paper creates new opportunities to organize and coordinate healthcare

Healthcare processes require the cooperation of different healthcare providers and medical disciplines. In such an environment, the quality and safety of care rely heavily on the ability to exchange information from one software to another, and from one person to another. However, information systems that support a seamless flow of information along healthcare processes are not broadly used in healthcare environments. Usually, healthcare organizations have their own autonomously developed information systems that do not support the cooperation of different organizational units and medical disciplines. This has led to the fragmentation of the patients’ information in proprietary heterogeneous systems across healthcare organizations. The aim of this paper is to: (1) explore how healthcare practitioners´ in Sweden experience information system support in their daily work activities, and (2) present and illustrate how key design principles of a process support system prototype can support healthcare practitioners in their work practice. An important conclusion from this research is that a process support as the one described in this paper creates new opportunities to organize and coordinate healthcare.

It is crucial to involve the patient in the development of patient accessible eHealth systems. But who, how and when? Patient involvement in development of e-health services for citizens has gained little attention to date. It is important to highlight the experiences, pros and cons, and explore new issues and future challenges that arise for all different stakeholders involved in e-health development.

One source of inspiration for this workshop is the European funded SUSTAINS project which aims to deploy e-health services with the patient as an important actor. Another is the Swedish research project My Care Pathways where focus is on development of new e-health services that enable the patient to follow and interact with their care processes.

This workshop aims to discuss the experiences made in ongoing European deployment projects of online e-health services as well as methods to improve patient participation in such development based on current evaluations and future needs.

The objective is to collect and disseminate various experiences from novel e-health service deployment in Europe; during the workshop active participation is desired via twitter and other eLearning tools, and afterwards the results of the workshop are published on easily accessible web sites.

Information and Communication Technology for health and wellbeing ('eHealth') is becoming increasingly important to deliver top-quality care to European citizens. There are a number of currently ongoing national and international efforts related to public access to eHealth services. In Sweden, the action research project DOME (Deployment of Online Medical Records and eHealth Services) aims to study and contribute to ongoing national deployment projects. This paper presents the DOME project's objectives, goals and methods as well as expected results regarding the national deployment of online medical records.

Many healthcare organizations are currently committed to organizational change and quality improvement projects. Unfortunately, little effort is put into health information system development according to usability requirements and methodology, leading to bottlenecks in the eHealth systems when implemented into daily practice. This paper presents a national initiative to build usability of eHealth systems into the Swedish national eHealth strategy and its action plan to ensure impact on practice. Action researchers within the health informatics domain collaborated with representatives of different care professions to propose high-priority changes necessary to improve the usability of health information systems.