Criminal law aspects of data electronization in healthcare Abstract Continuous spread of information and communication technologies into all aspects of everyday life goes hand in hand with importance of data and information. This trend can be also observed in the healthcare sector which has recently experienced massive electronization. However, along with electronization, respective criminal law aspects are developing as well. Relevancy of this issue can be clearly demonstrated on the recent cyber-attacks on healthcare providers, which seriously jeopardize valuable data in healthcare. The aim of this work is to set forth comprehensive summary of criminal aspects of data electronization in healthcare with emphasis on the importance of electronization phenomenon, the issue of cybercrime and selected crimes that may be committed in connection with data electronization. This work also aims at highlighting negative impact of electronization in the global information society. In terms of content, the work consists of five structured chapters, in which the author defined relevant theory behind the issue and subsequently performed her own analysis thereof. The first chapter defines the term "data" as well as its categories and legislative framework with emphasis on area of criminal law and related protection of...

<p>With the increase in diabetes prevalence and the resultant greater demand for diabetes services, together with fewer resources to pay for them, diabetes has become a multi-billion dollar economic burden the world over. Electronic personal health records (ePHRs) have been positioned as transformational agents that facilitate productive interactions between patients and their healthcare providers, and support self-management of chronic diseases such as diabetes. In keeping with a patient -centred model of care, healthcare services such as ePHRs that incorporate patients' preferences and level of activation are being sought to increase and sustain patients' utility of these services. This study examines patients' preferences for the attributes of an ePHR service that supports diabetes self-management. It also explores factors that might influence their preferences. Conjoint analysis, one of the most widely used approaches to predict consumer preferences was chosen for this study. Specifically, adaptive choice-based conjoint analysis was used to identify the attributes of a winning ePHR service framework. Using Sawtooth Software's suite of interviewing products, a webbased survey was developed comprising six ePHR service attributes. Hierarchical Bayes estimations were used to quantify patient preferences while latent class analysis was used to segment the sample. Additional statistical analyses were conducted to identify any significant relationships between patient characteristics and their preferences. A stratified sample of 150 patients with Type 1, Type 2, and Prediabetes were unwavering in their preference for an internet-based ePHR service supplied by a physician or specialist. They also preferred to exchange their health information with their physician or nurse, once a month, at no cost. Monthly service fees were considered the most important ePHR service attribute. These results were applied in market simulations and sensitivity analyses to uncover the more complex effects of the ePHR attributes on the overall utility of the service. Exchanging health information every two to three months as opposed to once a month, and offering an ePHR service in the form of a monitoring device as opposed to an internet-based application, may be viable options. Selling an ePHR service directly to patients via a commercial supplier had negative impact on the utility of the service. This research also indicated that it would be prudent to take patients' ages and perceived health status into consideration when developing and marketing an ePHR service. Surprisingly, patients' level of activation for self-management did not appear to playa major role in influencing their preferences for the attributes of the ePHR service framework identified in the study.</p> / Master of Science (MS)

Heart failure (HF) affects many older Canadians with recurrent hospitalizations despite post-discharge strategies to prevent readmission. Self-care is key to the management of HF in the home setting and can potentially lead to better clinical outcomes. Proper HF self-care includes tasks such as daily weight and symptom monitoring, as well as adjusting diuretics based on weight. Patients find HF self-care challenging, with less than 50% of patients regularly weighing themselves. Mobile applications to support self-care have been shown to be effective, however, due to their lack of consideration for barriers such as literacy, numeracy and cognitive impairment within their design, these applications are not usable for many older patients. Previous work supports the use of a paper-based standardized diuretic decision support tool (SDDST) to promote self-care in older individuals with HF. The objective of this study was to use participant (HF patients, informal care-providers) input to convert the paper-based SDDST into a user-centered electronic mobile application. We recruited 12 patients (male and female, age > 60 years) with a confirmed diagnosis of HF, and 7 informal caregivers from the Heart Function Clinic at the Hamilton Health Sciences General site. HF patients were categorized into three groups, 1) adequate self-care patients (6), 2) inadequate self-care patients without a CP (2) or 3) inadequate self-care patients with a CP (4), based on their self-care abilities measured with the Self-Care Heart Failure Index (SCHFI) where a score of > 70 is considered self-care adequate. We conducted semi-structured interviews with HF patients and CPs using Persona-Scenarios. Interviews were analyzed using NVivo, version 10, for emerging themes regarding self-care. Following data analysis, we identified 6 major themes, 1) Usability of technology, 2) Communication, 3) Application customization, 4) Complexity of Self-Care, 5) Usefulness of HF Related Information and 6) Long-Term Use and Cost. Many of the challenges patients and CPs mentioned involved their unfamiliarity with technology. However, by addressing these themes, we were able to develop a series of requirements and modifications to improve the usability of our app design. / Thesis / Master of Science (MSc) / Heart failure (HF) is one of the leading causes of hospitalization and re-hospitalization in older adults. . If patients are able to take care of themselves (self-care) at home they will be less likely to be readmitted to the hospital. However, many patients find self-care difficult, so they do not manage their symptoms. To assist patients in understanding or following their treatment, various mobile health applications have been developed. Unfortunately, older patients do not commonly use these applications because of their complicated design. In this study, we interviewed patients and their informal caregivers to help design our HF self-care app. We gathered information on features they may perceive to be helpful. Our goal was to use their feedback to make the app simpler and more user-oriented, which will make self-care easier.

Introduction: OA of the knee and/or hip is a common joint disease where the first line treatment is physical activity and exercise, weight management and patient education. Previous research has shown that digital aids and product can be used as support for exercise. VITALA is a new digital app under development. Aims: The purpose of this study was to evaluate the effectiveness of VITALA regarding joint pain, opinion about the knee and/or hip and lower extremity function in people with OA of the knee and/or hip and whether signs of altered pain processing affected the effect.                                                   Methods: In a prospective cohort study, 17 participants with clinically diagnosed OA of the knee and/or hip exercised with the support of VITALA for three months. Outcome measures were Numerical Pain Rating Scale, Knee Injury/Hip disability and Osteoarthritis Outcome Score and 30 Second Chair Stand Test. Hierarchical regression analyses were used to see if the effect on the outcome measures was affected by pressure pain thresholds, neuropathic pain symptoms or central nervous symptoms.                 Results: No significant effect was seen on any of the outcome measures. Central Sensitization Inventory did as an individual variable in a regression model with age and gender have a significant effect on change in Knee Injury/Hip disability and Osteoarthritis Outcome Score. Apart from this, no pain type affected the results. Conclusion: Three months of exercising with the VITALA app did not influence the outcome measures. The pain characteristic variables did generally not affect the results. This specific app requires further development and evaluation before it can be recommended to people with OA / Introduktion: Artros i höft och/eller knä är vanliga ledsjukdomar där första ledets behandling är fysiskt aktivitet och träning, viktkontroll och utbildning. Tidigare forskning har visat att digitala tjänster och produkter kan användas som stöd för träning. VITALA är en ny digital tjänst under utveckling. Syfte: Syftet med denna studie var att utvärdera effektiviteten av VITALA vad gäller ledsmärta, åsikt om knät/höften, och funktion i nedre extremitet samt huruvida tecken på förändrad smärtmodulering påverkade effekten. Metod: I en prospektiv kohortstudie tränade 17 deltagare med klinisk artros med stöd av VITALA i tre månader. Utfallsmått var Numerical Pain Rating Scale, Knee Injury/Hip disability and Osteoarthritis Outcome Score och 30 Second Chair Stand Test. Hierarkiska regressionsanalyser användes för att mäta om effekten på varje utfallsmått påverkades av smärttrösklar, neuropatiska smärtsymtom eller centralnervösa symtom.                  Resultat: Ingen signifikant effekt sågs avseende något av utfallsmåtten. Central Sensitization Inventory hade som individuell variabel i en regressionsmodell med ålder och kön en signifikant effekt på förändring av Knee Injury/Hip disability and Osteoarthritis Outcome Score. I övrigt påverkade inte smärttyp resultaten. Slutsats: Tre månader av träning med appen VITALA påverkade inte utfallsmåtten. Smärttypsvariablerna verkade generellt inte påverka resultaten. Denna app kräver fortsatt utveckling och utvärdering innan den kan rekommenderas till personer med artros.

Health care organisations in Finland, Norway, Scotland and Sweden face similar challenges when it comes to providing health services in the sparsely populated rural areas. Vast distances, centralized health services, harsh climate and limited access to public transport can make accessing health services difficult. In order to provide health services for the population of the Northern Periphery it is necessary to develop health care service models which can address the problems of isolation, remoteness and centralized health services. One way of overcoming these issues is to develop eHealth services that focus on increasing access to health services in the rural areas. As health care organisations’ resources are often limited, the possibilities to develop, test and implement eHealth services can be restricted. Thus, transferring existing eHealth services across organisational and national boundaries can be beneficial, as the services have already been tested in practice. Taking advantage of the knowledge health care organisations in different countries have can support organisations in their drive to develop service provision models that reach out to the population of the Northern Periphery. The main objective of this thesis is to understand how local conditions influence the outcomes of eHealth transfer. In order to do so the transnational implementation of five eHealth services was investigated in five case studies. This research gives insight into how differences in organisational structure, ICT infrastructure and the size of the patient base impact health care organisations’ possibility to transfer and utilize existing eHealth services. In addition, this research offers rich insights into how these factors impact the sustainability of eHealth services. The case studies also illustrate how stakeholder collaboration and knowledge exchange impact the process of transferring eHealth services, and how patients’ and professionals’ level of trust in eHealth services can materialize in practice. In addition, this thesis demonstrates why the benefits obtained with a specific eHealth service may, or may not be duplicable in another organisational context. The research discussed in this thesis also contributes to the understanding of how assessing organisational readiness prior to transferring and eHealth services can facilitate the implementation process.

Background: Smartphones and related applications are increa singly gaining relevance in the healthcare domain. We previously assessed the demands and preferences of medical students towards an application accompanying them during a course on general practice. The current study aims to elucidate the factors associated with adop tion of such a technology. Therefore we provided students with a prototype of an application specifically related to their studies in general practice.

Das eHealth Service Engineering für seltene Erkrankungen erörtert die systematische Entwicklung von wissensbasierten medizinischen Dienstleistungen (eHealth-Services). Im Fokus der Forschungsarbeit steht das komplexe Problem der Informationsversorgung von Patienten mit degenerativen Nervenerkrankungen (hier: Amyotrophe Lateralsklerose, kurz: ALS). Der unvorhersehbare Krankheitsverlauf, der mit schwerwiegenden Symptomen einhergeht, stellt hohe Anforderungen an die behandelnden Ärzte und beteiligten Akteure, um den betroffenen Patienten eine umfassende Beratung anzubieten. Die Herausforderung ist es, das persönliche Beratungsgespräch IT-basiert zu unterstützen und Patienten eine bedarfsgerechte Informationsbasis für die partizipative Entscheidungsfindung zu bieten. Der exemplarische Anwendungsfall wird anhand umfangreicher Quellenanalysen multidimensional konzeptualisiert. Die extrahierten Konzepte und Relationen werden strukturiert und zu einem semiformalen Gesamtgraphen aggregiert. Dieser Wissensgraph verdeutlicht die fünf systemischen Entwicklungsbereiche Informationen über Patienten (1), Informationen für Patienten (2), Dokumentation bisher getroffener Entscheidungen (3) und dementsprechende Offerten von medizinischen Produkten und Dienstleistungen (4) sowie Management und Koordination der Versorgung (5). Für die Teilbereiche (1-4), welche die Informationsversorgung betreffen, wird eine formale Repräsentation in Form einer RDF-basierten Ontologie (Dispedia) entwickelt und als Linked Data veröffentlicht. Die Nutzung der Dispedia Ontologie wird durch die prototypische Implementierung einer eHealth Anwendung demonstriert. Das Ergebnis ist eine bedarfsgerechte Informationsversorgung für Patienten mit seltenen Erkrankungen.

Do superfast broadband and tailored interventions improve use of eHealth and reduce health related travel? Introduction – eHealth has been shown to have promising health outcomes in numerous areas, however many people remain digitally excluded and therefore suffer an inequality in health service provision. Lack of internet infrastructure, personal skills, and service provision have been identified as potential barriers to eHealth but as yet there is no good evidence of the significance of these barriers and the impact of interventions to improve them. This PhD aimed to assess impact on eHealth uptake of three interventions (i) superfast broadband, (ii) a tailored booklet to help participants improve personal internet skills and support, (iii) GP interventions to improve health service provision of eHealth. A subsidiary aim was to assess the impact on miles travelled. Methods - In a cluster quasi-randomised factorial controlled trial, 1388 households from 78 postcodes were sampled in 2013 from the 20088 Cornish postcodes and allocated to the 8 (2X2X2) arms of the study. A unique sampling method was used to prevent contamination between arms. Comparison of ‘eHealth readiness’ and ‘miles travelled’ from baseline to 18-month follow-up between the 8 arms of the study was used to assess the impact of interventions. Interventions were tailored based on responses from the initial baseline survey and designed using aspects of the theory of diffusion of innovations. An overall eHealth Readiness score (0-10) was obtained from a validated self-completed questionnaire combining four sub-scales (Personal, Provision, Support, Economic). The standard deviation of the eHealth Readiness score represents a measure of eHealth inequalities. Findings – No significant differences were shown between each intervention arm of the study, either singly or in combination (all p > .05). eHealth Readiness significantly improved over the 18-month trial period (M=4.36 vs M=4.59, t(235)=4.18 p < .001, CI=0.13-0.35). This increase is evidenced by increases in Personal and Provision scores (t(255)=3.191 p=.002, t(258)=3.410 p=.001). There was no change in eHealth inequality. The proportion of internet users, mobile use and happiness with internet speed also increased. Average travel to GPs did not significantly differ between baseline and follow-up (12.3 vs 13.0, t(251)=.44, p=.66). No correlation was shown between eHealth Readiness and total travel miles to GP practices. Discussion – Individuals within Cornwall became more ready to adopt eHealth services over the 18 months of study, increasing in both their personal ability to use eHealth and their methods of access. This increase did not cause a larger digital divide. However, this increase could not be attributed to any of the three interventions. Further research should focus on making use of the improvement of infrastructure within Cornwall and seek to implement eHealth services. The eHealth readiness of Cornwall should be assessed in a longitudinal study to understand the effects of time of the superfast rollout. Qualitative studies should take place on persons of interest to help design more effective interventions with the aim to achieve a societal drive to sustainable use and adoption of eHealth.  Contribution to knowledge – Previously internet infrastructure has been acknowledged as a barrier to eHealth. This PhD was the first to analyse the impact of a high-speed internet rollout alongside other interventions on eHealth readiness. The methods in this study were unique and provide the basis for further work, both in the creation of a sampling method to reduce contamination between cluster interventions and as the first time a measure of eHealth readiness and eHealth inequality has been used to assess the effectiveness of eHealth interventions.

Background: Tobacco dependence is among the strongest of addictions and smoking is a significant risk factor for a large number of diseases as well as premature death. New treatment options for tobacco dependence have emerged with the implementation of eHealth approach, especially those provided remotely. In the field of addictology we are mainly talking about applications for smoking cessation, which can be an attractive option for those who want to quit smoking, but their effectiveness needs to be further examined. Aims: The main objective of this study is to describe user experience of tobacco smokers using the online intervention Endre. Partial aims were to find how users rated the visual interface of the intervention, the user-friendliness and what method of cessation they would choose for their future atempts to quit. Material and methods: Data collection was carried out using a quantitative method of probability selection, namely a simple intentional (criteria) selection through an online questionnaire tool sent by e-mail to selected participants of the ongoing RCT study. The research group consisted of 105 respondents, of whom 60 were women and 45 men. To evaluate the collected data, MS excel was used, where frequency analyzes, summary statistics and testing of statistical hypotheses were...

Introduction: There is an urgent need to find new ways of improving the quality and safety of healthcare whilst achieving efficiencies of service. E-health technologies offer exciting opportunities to support patients in managing chronic disease. Following continuous advances and increasing use, the Internet provides an ideal platform to empower patients. Previous studies have demonstrated that people taking a more active role in managing their health, experience improved outcomes. Based on these principles and funded by Crohn's and Colitis UK, a new web-based care package was designed for adults with inflammatory bowel disease. Specifically 'My IBD Portal' aimed to provide greater access to information, improved communication and encourage greater engagement. Following its implementation at a single centre NHS Trust, the new IBD patient portal was evaluated in the clinical setting. Methods: Following a literature review and significant patient involvement, 'My IBD Portal' was designed and implemented within a single centre setting. The system was evaluated over a 6-month period using a pre-post observational designed study. The primary objective was to examine patient experience. Usage, usability and satisfaction were measured. Secondary objectives included assessing factors that predicted use, analysed using logistic regression models. Changes in IBD knowledge, patient engagement, medication adherence and health utilisation were also explored using univariate analysis and multiple regression models. Results: 183 participants enrolled in the 6-month observational study. 63.4% of participants visited the IBD Portal more than once and were defined as users. In total there were 2080 individual visits to the Portal. The mean number of logins was 11.4 (SD 21.5) and median 3 (IQR 1-12). The mean duration of each visit was over 5 minutes. Individual use was highly variable. Approximately a quarter of participants never or only once used the IBD Portal, with an equal proportion visiting over 10 times. Satisfaction amongst users was high. 98% of respondents were either satisfied or very satisfied. 90% perceived the IBD Portal supported their management and 32% felt it helped with treatment decisions. An overwhelming majority expressed a desire to continue using the IBD Portal after completion of the study. Viewing test results (23%) was the most common section visited, followed by clinic letters (21%). 29% of participants reported sharing their access with a partner or family member. The qualitative data supported the quantitative findings. Many users expressed considerable benefit from online provision to their IBD health record. Comparing users to non-users, logistic regression modeling showed active disease was significantly associated with use. Changes in health outcomes were explored using both univariate and regression analyses. Following multiple regression modeling, an increase in patient activation was significantly associated with Portal use (p < 0.02). A positive trend was observed in perceived support (p=0.06). Improvements in IBD knowledge and medication adherence were not observed. Health utilisation was greater amongst users with more frequent outpatient and helpline contacts observed. Conclusion: Design and implementation of an IBD Portal within the NHS setting is feasible. Technological, human and organisational factors need to be carefully considered during development to support adoption. The IBD Portal was used by a majority of participants and was perceived to support their care. Following adoption in other NHS clinical settings, a cluster randomised controlled study would provide the optimal study design to complete the evaluation process.