Background: Diabetes prevalence in Scotland is increasing at ~4.6% annually; 247,278 (4.7%) in 2011. My Diabetes My Way (MDMW) is the NHS Scotland information portal, containing validated educational materials for people with diabetes and their carers. Internet-based interventions have potential to enhance self-management and shift power towards the patient, with electronic personal health records (PHRs) identified as an ideal method of delivery. In December 2010, a new service was launched in MDMW, allowing patients across Scotland access to their shared electronic record. The following thesis aims to identify and quantify the benefits of a diabetes-focused electronic personal health record within NHS Scotland. Methods: A diabetes-focused, population-based PHR was developed based on data sourced from primary, secondary and tertiary care via the national diabetes system, Scottish Care Information - Diabetes Collaboration (SCI-DC). The system includes key diagnostic information; demography; laboratory tests; lifestyle factors, foot and eye screening results; prescribed medication and clinical correspondence. Changes are tracked by patients over time using history graphs and tables, data items link to detailed descriptions explaining why they are collected, what they are used for and what normal values are, while tailored information links refer individuals to facts related to their condition. A series of quasi-experimental studies have been designed to assess the intervention using subjectivist, mixed-methods approaches incorporating multivariate analysis and grounded theory. These studies assess patient expectations and experiences of records access, system usage and uptake and provide preliminary analysis on the impact on clinical process outcomes. Survey questionnaires were used to capture qualitative data, while quantitative data were obtained from system audit trails and from the analysis of clinical process outcomes before and after the intervention. Results: By the end of the second year, 2601 individuals registered to access their data (61% male; 30.4% with type 1 diabetes); 1297 completed the enrolment process and 625 accessed the system (most logins=346; total logins=5158; average=8.3/patient; median=3). Audit trails show 59599 page views (95/patient), laboratory test results proving the most popular (11818 accesses;19/patient). The most utilised history graph was HbA1c (2866 accesses;4.6/patient). Users are younger, more recently diagnosed and have a heavy bias towards type 1 diabetes when compared to the background population. They are also likely to be a more highly motivated ‘early adopting’ cohort. Further analysis was performed to compare pre- and post-intervention clinical outcomes after the system had been active for nearly two and a half years. Results of statistical significance were not forthcoming due to limited data availability, however there are grounds for encouragement. Creatinine tests in particular improved following 1 year of use, with type 1 females in particular faring better than those in patient other groups. For other clinical tests such as HbA1c, triglycerides, weight and body mass index improvements were shown in mean and/or median values.96% of users believe the system is usable. Users also stated that it useful to monitor diabetes control (93%), improve knowledge (89%) and enhance motivation (89%). Findings show that newly diagnosed patients may be more likely to learn more about their new condition, leading to more productive consultations with the clinical team (98%). In the pre-project analysis, 26% of registrants expressed concerns about the security of personal information online, although those who actually went on to use it reported 100% satisfaction that their data were safe. Engagement remains high. In the final month of year two, 44.6% of users logged in to the system. 55.3% of users had logged in within the previous 3 months, 78.9% within the previous 6 months and 91.4% within the previous year. Some legacy PHRs have failed due to lack of uptake and deficiencies in usability, so as new systems progress, it is essential not to repeat the mistakes of the past. Feedback: "It is great to be able to view all of my results so that I can be more in charge of my diabetes".Conclusion: The MDMW PHR is now a useful additional component for the self-management of diabetes in Scotland. Although there are other patient access systems available internationally, this system is unique in offering access to an entire national population, providing access to information collected from all diabetes-related sources. Despite its development for the NHS Scotland environment, it has the potential to connect to any electronic medical record. This local and domain-specific knowledge has much wider applicability as outlined in the recommendations detailed, particularly around health service and voluntary sector ownership, patient involvement, administrative processes, research activities and communication. The current project will reach 5000 patients by the end of 2013.

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.

<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)

Yes / Background: Electronic personal health records (ePHRs) are secure Web-based tools that enable individuals to access, manage, and share their medical records. England recently introduced a nationwide ePHR called Patient Online. As with ePHRs in other countries, adoption rates of Patient Online remain low. Understanding factors affecting patients’ ePHR use is important to increase adoption rates and improve the implementation success of ePHRs. Objective: This study aimed to examine factors associated with patients’ use of ePHRs in England. Methods: The unified theory of acceptance and use of technology was adapted to the use of ePHRs. To empirically examine the adapted model, a cross-sectional survey of a convenience sample was carried out in 4 general practices in West Yorkshire, England. Factors associated with the use of ePHRs were explored using structural equation modeling. Results: Of 800 eligible patients invited to take part in the survey, 624 (78.0%) returned a valid questionnaire. Behavioral intention (BI) was significantly influenced by performance expectancy (PE; beta=.57, P<.001), effort expectancy (EE; beta=.16, P<.001), and perceived privacy and security (PPS; beta=.24, P<.001). The path from social influence to BI was not significant (beta=.03, P=.18). Facilitating conditions (FC) and BI significantly influenced use behavior (UB; beta=.25, P<.001 and beta=.53, P<.001, respectively). PE significantly mediated the effect of EE and PPS on BI (beta=.19, P<.001 and beta=.28, P=.001, respectively). Age significantly moderated 3 paths: PE→BI, EE→BI, and FC→UB. Sex significantly moderated only the relationship between PE and BI. A total of 2 paths were significantly moderated by education and internet access: EE→BI and FC→UB. Income moderated the relationship between FC and UB. The adapted model accounted for 51% of the variance in PE, 76% of the variance in BI, and 48% of the variance in UB. Conclusions: This study identified the main factors that affect patients’ use of ePHRs in England, which should be taken into account for the successful implementation of these systems. For example, developers of ePHRs should involve patients in the process of designing the system to consider functions and features that fit patients’ preferences and skills to ensure systems are useful and easy to use. The proposed model accounted for 48% of the variance in UB, indicating the existence of other, as yet unidentified, factors that influence the adoption of ePHRs. Future studies should confirm the effect of the factors included in this model and identify additional factors.