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.

Bakgrund: Diabetes typ 2 har utvecklats till en global folksjukdom och utgör cirka 90 % av all diabetes. Kända orsaker till att insjukna i T2D är ärftlighet, ålder och dåliga levnadsvanor. En stor del av behandlingen består av egenvård och patienten har eget ansvar över sin sjukdom. För att kunna utföra egenvård på rätt sätt krävs det att patienter har kunskap om hur kost, motion och andra faktorer påverkar deras blodsockernivåer. Utmaningar och svårigheter som patienter upplever vid utförande av egenvård kommer att styra deras behov av kunskap samt stöd och därför är det viktigt att som sjuksköterska ha en förståelse om detta.   Syfte: Denna studies syfte var att beskriva patienter med diabetes typ 2 upplevelser av sin egenvård.  Metod: Systematisk litteraturöversikt som utgick från 14 vetenskapliga studier med kvalitativ ansats. Den analysmetod som användes var innehållsanalys. Resultat: Tre kategorier och 7 subkategorier kunde synliggöras. De tre kategorierna var Upplevelser av inre faktorer som hindrar genomförandet av egenvård, Upplevelser av inre faktorer som främjar genomförandet av egenvård samt Upplevelser av yttre faktorer som påverkar genomförandet av egenvård.  Konklusion: För att kunna erbjuda personcentrerad vård måste sjuksköterskan ha en förståelse för de hinder som patienter upplever vid utförandet av egenvård. Resultatet i denna studie visade att många patienter saknade kunskap om kosthållning och motion vilket inverkade negativt på deras sjukdomshantering. Patienter upplevde även utmaningar i att hantera de känslor som var vanligt förekommande samt de utökade krav som sjukdomen bidrog till. Faktorer som främjade genomförandet av egenvård var motivation, självinsikt samt acceptans och patienter upplevde att omgivningen hade en stor påverkan på deras förmåga att göra livsstilsförändringar. I och med komplexiteten på sjukdomen är det viktigt att behandlingen utformas och anpassas efter varje patients individuella behov och önskemål. / Background: Type 2 diabetes has developed into a global public disease and may account for about 90 percent for all diagnosed cases of diabetes. Known causes of T2D disease are heredity, older age and unhealthy lifestyle behaviors. Self-management is an important part of diabetes treatment and the patients have a responsibility over their illness. To be able to manage self-care in the right way requires that patients have knowledge about how diet, exercise and other factors affect their blood sugar levels. The challenges and difficulties that patients experience while managing self-care will control their need for knowledge and support and that is why it is important for nurses to have an understanding of these issues. Aim: The aim of this study was to describe how patients with type 2 diabetes experience their self-management.  Method: Systematic literature review based on 14 scientific studies with a qualitative approach. The analysis method used was content analysis. Result: Three categories and seven subcategories were identified and presented in this study. The three categories were Experiences of internal factors that hinder the implementation of self-care, Experiences of internal factors that promote the implementation of self-care and Experiences of external factors that affect the implementation of self-care.   Conclusion: To be able to offer patient centered care nurses need an understanding of the obstacles that patients experience when practicing self-care. The result of this study showed that a lot of patients lacked knowledge about nutrition and physical exercise which had a negative effect on their self-management behaviors. Patients also experienced challenges in dealing with common emotions and the increase of requirements that came along with the disease. Supporting factors that promoted self-care were motivation, self-perception and acceptance and patients experienced that the social environment had a major impact on their ability to make lifestyle changes. As a result of the complexity of the disease it is important that treatment is designed and adapted to every patient’s individual needs and wishes.

Background: Patient empowerment is viewed as a priority by policy makers, patients and practitioners worldwide. Although there are a number of measures available, none have been developed specifically for patients in the UK with long-term conditions. It is the aim of this study to report the development and preliminary validation of an empowerment instrument for patients with long-term conditions in primary care.Methods: The study involved three methods. Firstly, a systematic review was conducted to identify existing empowerment instruments, and to describe, compare and appraise their content and quality. The results supported the need for a new instrument. Item content of existing instruments helped support development of the new instrument. Secondly, empowerment was explored in patients with long-term conditions and primary care practitioners using qualitative methods, to explore its meaning and the factors that support or hinder empowerment. This led to the development of a conceptual model to support instrument development. Thirdly, a new instrument for measuring empowerment in patients with long-term conditions in primary care was developed. A cross-sectional survey of patients was conducted to collect preliminary data on acceptability, reliability and validity, using pre-specified hypotheses based on existing theoretical and empirical work. Results: Nine instruments meeting review inclusion criteria were identified. Only one instrument was developed to measure empowerment in long-term conditions in the context of primary care, and that was judged to be insufficient in terms of content and purpose. Five dimensions (‘identity’, ‘knowledge and understanding’, ‘personal control’, personal decision-making’, and ‘enabling other patients’) of empowerment were identified through published literature and the qualitative work and incorporated into a preliminary version of the new instrument. A postal survey achieved 197 responses (response rate 33%). Almost half of the sample reported circulatory, diabetic or musculoskeletal conditions. Exploratory factor analysis suggested a three factor solution (‘identity’, ‘knowledge and understanding’ and ‘enabling’). Two dimensions of empowerment (‘identity’ and ‘enabling’) and total empowerment showed acceptable levels of internal consistency. The measure showed relationships with external measures (including quality of chronic illness care, self-efficacy and educational qualifications) that were generally supportive of its construct validity.Conclusion: Initial analyses suggest that the new measure meets basic psychometric criteria and has potential for the measurement of patient empowerment in long-term conditions in primary care. The scale may have a role in research on quality of care for long-term conditions, and could function as a patient-reported outcome measure. However, further validation is required before more extensive use of the measure.