This study is the first report of Saudi patients in the literature on electronic personal health records (ePHRs). It investigates patients’ attitudes and expectations regarding ePHRs in Saudi Arabia. It also gives insights about addressing the gap between the interest and the utilization of ePHRs by presenting information about patients’ preferences for ePHR features and activities. The findings show higher interest rates in ePHR use compared to other studies with similar sample frame in developed countries. They also indicate high levels of perceived usefulness of ePHRs on patients’ health and healthcare. More research is needed to explore the ePHR privacy concerns of patients and the key factors in improving the use of ePHRs among specific populations such as the elderly and those patients with chronic disease. / Thesis / Master of Science (MSc) / This study is the first report of Saudi patients in the literature on electronic personal health records (ePHRs). It investigates patients’ attitudes and expectations regarding ePHRs in Saudi Arabia. It also gives insights about addressing the gap between the interest and the utilization of ePHRs by presenting information about patients’ preferences for ePHR features and activities. More research is needed to explore the ePHR privacy concerns of patients and the key factors in improving the use of ePHRs among specific populations.

Despite rapid advances in technology, there is currently a complex, and somewhat disjointed approach to the way health information is collected, stored, and organized for both healthcare consumers and professionals. Incompatible electronic medical records from various healthcare providers add to the complexity of a system tasked with delivering a patient’s relevant medical information in a timely manner to the appropriate point of care. Personal health records (PHR) grew out of the efforts to produce an integrated electronic record to manage the multifaceted aspects of healthcare required by both healthcare consumers and professionals. PHRs are a transformative technology with the potential to alter patient-provider relationships in a way that produces a more efficient and cost effective healthcare system as a result of better patient outcomes. PHRs can potentially include a wide variety of users ranging from the lay public to clinical professionals. As such, it is important to identify potential user groups and their corresponding health information needs in order to design PHRs that maximize accessibility, usability, and clinical relevance. This study focused on laypeople who represented a wide age-range of individuals, evenly split in gender, with an above average level of computer literacy. Most of the participants had not used an electronic PHR prior to this study. However, after a hands-on session with PHR software, most participants found it to be easy to use, accompanied with the functionality they expected from such a system. Most participants were satisfied that an electronic PHR would meet their health information needs and would recommend the use of PHRs to family and friends. Anyone in the general public is a potential PHR user. However, this study found that individuals with chronic conditions and those with complex health needs had the most to gain from using a PHR as an integral part of their healthcare routine. This study also demonstrated that an individual’s health condition has a stronger influence on their perceptions about the usefulness of PHRs than does their demographic background (age, education, computer literacy). Finally, this study established that PHRs are considered by participants of the study to be useful tools in meeting their health information needs. / Graduate / 0723 / 0769 / 0984 / dguarin@uvic.ca

Engaging youth with Type 1 diabetes (T1D) in the self-management of daily tasks and decision- making provides opportunities for positive health outcomes. However, emerging adulthood and care transitions are associated with decreased clinic attendance and diabetes complications. The process of shared decision making (SDM) comprises four key elements – acknowledge, consider, decide, act - and is identified as an optimal approach to making self-management decisions, yet it has been difficult to implement in practice. Personal health record (PHR) technology is a promising approach for overcoming such barriers. Still, today PHRs have yet to root themselves into care and present an opportunity for improvement in SDM and engagement in self-management decision making. Using a sequential two-phased investigation, this dissertation describes how PHRs can be designed to enable SDM and integrated into clinical practice to engage youth with T1D in self-management decision making. Phase 1 proposed an integrated SDM–PHR (e-PHR) functional model justified by youth with T1D (n=7) and providers (n=15) via a user-centered design approach. Located within an interconnected EHR ecosystem, e-PHR integrates 23 PHR functionalities for the SDM process, whereby each SDM element was mapped to PHR functions with a moderate level of agreement between patients and providers (Cohen's kappa 0.60-0.74). The Phase 2 mixed methods, pre-implementation evaluation utilized an online measurement instrument and survey and individual interviews, underpinned by the Normalization Process Theory (NPT), to describe the four cognitive and behavioural processes (coherence, cognitive participation, collective action, reflexive monitoring) known to influence the success of complex socio-technical implementations. Youth with T1D (n=8), providers (n=11), and EHR/clinical leaders (n=8) in British Columbia participated. Reliability tests of NPT-based instrument negated the use of scores for the coherence and reflexive monitoring constructs. Qualitative results indicated that e-PHR made sense as explained by two themes for ‘Coherence’: game changing technology and sensibility of change. Participants strongly agreed (mean score=4.6/5) with ‘Cognitive Participation’ processes requiring an investment in commitment, explained by two themes: sharing ownership of the work and enabling involvement. Weak agreement (mean score=3.6/5) was observed with ‘Collective Action’ processes requiring an investment in effort, explained by one theme, uncovering the challenge of building collective action, and 3 sub-themes, assessing fit, adapting to change together, and investing in the change. Participants appraised e-PHR as explained by two themes for ‘Reflexive Monitoring’: reflecting on value, and monitoring and adapting. Finally, participants strongly agreed (mean score=4.5/5) that e-PHR would positively affect engagement in self-management decision making in two themes: care is efficient and care is person-centred. The establishment of a e-PHR functional model is a precursor to system design requirements. Using the NPT framework, findings from the process evaluation indicated participants invest in sense-making, commitment and appraisal work of this technology. However, successful integration of e-PHR into clinical practice to positively affect engagement in self-management decision making will only be attained when systemic effort is invested to enact it. Further research is needed to explore this gap to inform priorities and approaches for future implementation success. / Graduate

<p>In spite of numerous benefits that are suggested for consumers’ utilizing integrated personal health record (PHR) systems, research has shown that these systems are not yet popular or well known to consumers. Therefore, research is needed to understand what would rise adoption rates for these systems. Hence, the main objective of this dissertation is to develop and empirically validate a theoretical model for explaining consumers’ intention to use integrated PHR systems.</p> <p>In developing the theoretical model of this dissertation, theories of information systems adoption were integrated with Self-Determination Theory (SDT), which is a well established theory from the Psychology literature that explains the mechanism through which individuals become more self-determined, i.e., motivated to take more active (rather than passive) roles in undertaking different behaviours. Taking such an active role by consumers, in the context of personal health management, is suggested to be necessary for realizing the full benefits of integrated PHR systems.</p> <p>The proposed theoretical model was validated using the PLS approach to structural equation modeling, on data collected from a cross-sectional survey involving 159 participants with no prior experience in using PHR systems. A stratified random sampling was employed to draw a representative sample of the Canadian population. The results show that consumers with higher levels of self-determination in managing their health are more likely to adopt integrated PHR systems since they have more positive perceptions regarding the use of such systems. Further, such self-determination is fueled by autonomy support from consumers’ physicians as well as consumers’ personality trait of autonomy orientation.</p> <p>This study advances the theoretical understanding of integrated PHR system adoption, and it contributes to practice by providing insightful implications for designing, promotion, and facilitating the use of integrated PHR systems among consumers.</p> / Doctor of Philosophy (PhD)

<p>Pregnancy is one of the most important periods of a woman’s life, during which lots of potentially worrying changes occur in her body. Being aware of the nature of these changes can help her to make informed decisions and decrease her level of uncertainty and anxiety. Delivering information to pregnant women to help understand these changes is not a new idea. Brief searches of the web turned up many related resources and information. One important aspect of pregnancy that was found to be widely used was keeping daily records in a paper-based format. However, to the author’s best knowledge, there is no pregnancy specific electronic personal health record (ePHR) currently being used in Canada. In this study, a preliminary pregnancy specific PHR module was developed, and its usefulness and usability evaluated.</p> / Master of Science (MSc)

Ein zentrales Thema der medizinischen Informatik ist der institutionsübergreifende Austausch von Patientendaten zwischen den Akteuren des Gesundheitswesens. Die Notwendigkeit einer einheitlichen nationalen Telematikinfrastruktur für einen institutions-übergreifenden Austausch wurde auch von der Politik anerkannt. Dementsprechend wurde 2003 mit dem Gesetz zur Modernisierung der gesetzlichen Krankenversicherung (GMG) der erste Grundstein gelegt. Eine der Anwendungen, die laut Gesetzgebung (§ 291a SGB V) über die Telematikinfrastruktur umgesetzt werden sollte, ist die sogenannte elektronische Patientenakte. Diese Anwendung sollte es dem Patienten ermöglichen, seine Versorgungsdaten in einer eigenen Dokumentation zu führen und mit den Systemen seiner Behandler elektronisch zu kommunizieren. Bei der Gesetzgebung wurde der Fokus sehr eng gefasst, um aus Datenschutzgründen eine enge Zweckbindung der elektronischen Patientenakte sicher zu stellen. Wichtige Themen wie die Partizipation der Bürger und Patienten an der medizinischen Forschung wurden ausgeklammert. Werden die Prozesse der elektronischen Datenerfassung in der Versorgung und in der medizinisch-klinischen Forschung (z. B. den Universitätskliniken) betrachtet, so fällt auf, dass relevante Daten für die Versorgung und die Forschung häufig identisch sind. Da die Systeme von Forschung und Versorgung aber getrennt voneinander betrieben werden, kommt es zu Doppelerfassungen. Diese Doppelerfassungen sind für einen Anwender, der Daten in beide Systeme eintragen muss, schwer nachvollziehbar - auch die gewünschte Partizipation der Patienten an Forschungsvorhaben ist so kaum möglich. Die grundlegende Idee dieser Arbeit ist es, eine Schnittstelle zwischen einer elektronischen Patientenakte und der medizinischen Forschung gemäß den Vorgaben der nationalen Telematikinfrastruktur zu konzipieren. Damit soll dem oben geschilderten Problem der Doppelerfassung von Patientendaten entgegengewirkt werden, indem mit Hilfe dieser Schnittstelle ein Austausch von Patientendaten über eine elektronische Patientenakte zwischen den Systemen der Versorgung und Forschung ermöglicht wird. Zu diesem Zweck wurden zunächst die Systeme der Versorgung und der Forschung analysiert und ein Kommunikationsmodell sowie Datenschutzanforderungen für die Kommunikation zwischen einer elektronischen Patientenakte und den Systemen der Forschung formuliert. Auf Grundlage des Kommunikationsmodells und der Datenschutzanforderungen wurden sowohl eine Fach- als auch eine Sicherheitsarchitektur für die Schnittstelle zwischen einer elektronischen Patientenakte und den Systemen der Forschung beschrieben. Als Ergebnis konnte herausgestellt werden, dass die Anbindung der IT-Systeme der medizinischen Forschung über eine elektronische Patientenakte sicher und datenschutzkonform umgesetzt werden kann. Abschließend wird der entstandene Ansatz mit bisherigen Lösungen zur Nutzung von Versorgungsdaten für die medizinische Forschung kritisch verglichen und die Stärken einer in der nationalen Telematikinfrastruktur integrierte Löschung gegenüber alleinstehenden Insellösungen hervorgehoben. Es wird herausgestellt, dass die grundlegenden Konzepte stehen, aber noch erheblicher Aufwand erbracht werden muss, um ein auf nationaler Ebene verfügbares System bereitzustellen. Vorschläge für die weiteren Arbeiten zu einem funktionierenden System sowie weitere Potentiale der Ergebnisse dieser Arbeit werden in einem Ausblick aufgezeigt.

Submitted by Jordan (jordanbiblio@gmail.com) on 2017-05-26T15:57:24Z No. of bitstreams: 1 DISS_2014_Fabiane Blanco Silva.pdf: 1317399 bytes, checksum: a556a8cda4c48546fc263aa81c5f1c45 (MD5) / Approved for entry into archive by Jordan (jordanbiblio@gmail.com) on 2017-05-26T16:48:39Z (GMT) No. of bitstreams: 1 DISS_2014_Fabiane Blanco Silva.pdf: 1317399 bytes, checksum: a556a8cda4c48546fc263aa81c5f1c45 (MD5) / Made available in DSpace on 2017-05-26T16:48:39Z (GMT). No. of bitstreams: 1 DISS_2014_Fabiane Blanco Silva.pdf: 1317399 bytes, checksum: a556a8cda4c48546fc263aa81c5f1c45 (MD5) Previous issue date: 2014-02-07 / CAPES / A caderneta de saúde da criança é um instrumento que visa o acompanhamento integral de saúde da criança, pautado na vigilância à saúde. No Brasil, este instrumento configura-se como o principal documento para o registro das informações de saúde da criança e serve também como ferramenta de diálogo entre as famílias e os profissionais que atuam em diferentes espaços assistenciais voltados à esta população. Este estudo tem por objetivo analisar a percepção dos profissionais que atuam na atenção à criança na rede básica de saúde de Cuiabá-Mato Grosso, sobre a utilização da caderneta de saúde da criança. Trata-se de um estudo exploratório de abordagem qualitativa, que teve como sujeitos oito médicos, oito enfermeiros e quatro agentes comunitários de saúde, totalizando 20 profissionais que atuavam em unidades básicas de saúde deste município. A coleta dos dados foi realizada no período de fevereiro a março de 2013, por meio de entrevista semiestruturada, analisada pela técnica de análise temática. A análise dos dados possibilitou o agrupamento das informações em três eixos temáticos: as diversas finalidades da caderneta de saúde da criança; o preenchimento da caderneta de saúde da criança pelos profissionais e a utilização da caderneta de saúde da criança pela família. Os profissionais atribuem à caderneta a interpretação de que ela é um documento importante por conter diversas informações da saúde da criança, antes mesmo do seu nascimento. Além disso, possuem diferentes opiniões sobre a finalidade da mesma. Em relação aos dados a serem preenchidos no documento, os profissionais os percebem como importantes para o acompanhamento da saúde infantil, no entanto, para eles o registro desses ainda não recebe a devida importância em todos os atendimentos à criança. Para os profissionais, o preenchimento dos dados é de responsabilidade da equipe de saúde, médico, enfermeiro e técnicos de enfermagem. Houve discordância de opinião sobre a participação da família neste preenchimento, sendo que para uns a família não deve preencher nenhum dado, enquanto que para outros os dados de identificação, desenvolvimento e intercorrências com a criança podem ser registrados pela família. Segundo os entrevistados, vários são os fatores que influenciam o uso adequado da caderneta, tais como: perda ou esquecimento do instrumento pela mãe, burocracia do serviço, grande demanda de atividades na unidade, dentre outros. Na percepção dos participantes do estudo, apesar de a família ser orientada sobre a caderneta, esta ainda a utiliza muito pouco. Para os entrevistados, além de a família ter o direito de cobrar dos profissionais o registro dos dados na caderneta, esse comportamento da família demonstra o seu interesse pela saúde do filho e auxilia o trabalho dos profissionais. Nota-se também preocupação dos participantes do estudo quanto à utilização plena da caderneta. Assim, para que este instrumento se efetive como instrumento de vigilância e de promoção à saúde infantil, tanto os profissionais quanto as famílias deverão atribuir lhe maior valor. / The child health handbook is an instrument which aims the integral monitoring of child health, based on health surveillance. In Brazil, this instrument is configured as the main document for the information of child's health and also serves as a tool for dialogue between families and the professionals who work in different spaces for assistance to this population. This study aims to analyze the perceptions of professionals working in child care in basic health network of Cuiabá – Mato Grosso, on the use of child health handbook. This is an exploratory study of qualitative approach, which had as its subject eight doctors, eight nurses and four community health agents, totaling 20 professionals who acted in basic health units of this municipality. The data collection was carried out from February to March 2013, through a semi-structured interview, analyzed by the technique of thematic analysis. The data analysis allowed the grouping of information in three thematic axes: the several purposes of maternal and child health; the fill of the child health handbook by the professionals and the use of the child health handbook by the family. The professionals attach to the booklet the interpretation that it is an important document because it contains various information of child health, even before his birth. In addition, there are different opinions about the purpose of the same. Regarding the data to be filled in the document, the professionals refer to be important for the monitoring of children's health, however, for them the record of those still does not receive due weight in all attendances to the child. For professionals the padding of the data is of the responsibility of the health team, doctor, nurse and nursing technicians. There was disagreement of opinion on the participation of the family in this fill, and for some the family must not fill any data, while for other identification data, development and complications with the child can be registered by the family. There are many factors that influence the use of booklet by professionals such as loss or forgetfulness of the instrument by her mother, bureaucracy, high demand for service activities in the unit, among others. In the perception of the participants of the study, although the family be oriented about the booklet, the same still uses very little. For the interviewees, beyond the family having the right to ask for registration data from the professionals in the booklet, this family's behavior demonstrates its interest in the health of the child and assists the work of professionals. It is noted, also, a concern of the participants of the study regarding the full use of the notebook. Thus, for this instrument being effective such as surveillance and promotion document to child health both the professionals and the families should assign more value to it.

<p>With the increasing prevalence of chronic disease throughout the world, electronic Personal Health Records (ePHRs) have been suggested as a way to improve chronic disease self-management. However, ePHRs are not yet widely used by consumers. Protection Motivation Theory (PMT) has been successfully used to explain health related behaviours among chronic disease patients. In addition, Information Systems (IS) theories such as Task Technology Fit (TTF) have been successfully used to explain information technology adoption. This study combines PMT with Perceived Task Technology Fit (PTTF) and the health self-management readiness concept of the Patient Activation Measure (PAM) to propose a research model which will aid in the understanding of ePHR adoption by chronic disease patients. The role of educational interventions on various elements of the proposed model is also examined. A survey-based study of 230 participants is used to empirically validate the proposed model via structural equation modeling techniques. Results reveal that the PMT constructs, as well as PTTF and PAM all have significant direct or indirect effects on the intention to adopt an ePHR. In addition, the educational intervention analysis indicates that the provision of advanced ePHR education positively influences various constructs in the model, while the use of fear appeals through Diabetes complication education does not have an effect.</p> / Doctor of Philosophy (PhD)

La gestion électronique des données médicales consiste autant dans le simple traitement automatisé des données personnelles que dans le partage et l'échange de données relatives à la santé. Son encadrement juridique est assuré, à la fois, par les règles communes au traitement automatisé de toutes les données personnelles et par celles spécifiques au traitement des données médicales. Cette gestion, même si elle constitue une source d'économie, engendre des problèmes de protection de la vie privée auxquels le gouvernement français tente de faire face en créant l'un des meilleurs cadres juridiques au monde, en la matière. Mais, de grands chantiers comme celui du dossier médical personnel attendent toujours d'être réalisés et le droit de la santé se voit devancer et entraîner par les progrès technologiques. Le développement de la télésanté bouleverse les relations au sein du colloque singulier entre le soignant et le soigné. L'extension des droits des patients, le partage de responsabilité, l'augmentation du nombre d'intervenants, le secret médical partagé constituent de nouveaux enjeux avec lesquels il faut, désormais compter. Une autre question cruciale est celle posée par le manque d'harmonisation des législations augmentant les risques en cas de partage transfrontalier de données médicales / The electronic management of medical data is as much in the simple automated processing of personal data in the sharing and exchange of health data . Its legal framework is provided both by the common rules to the automated processing of all personal data and those specific to the processing of medical data . This management , even if it is a source of economy, creates protection issues of privacy which the French government tries to cope by creating one of the best legal framework in the world in this field. However , major projects such as the personal health record still waiting to be made and the right to health is seen ahead and lead by technological advances . The development of e-health disrupts relationships within one dialogue between the caregiver and the patient . The extension of the rights of patients , sharing responsibility , increasing the number of players , the shared medical confidentiality pose new challenges with which we must now count. Another crucial question is posed by the lack of harmonization of legislation increasing the risks in cross-border sharing of medical