AbstractBackground: 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.
|Date of Award||2014|
|Supervisor||Andrew Morris (Supervisor) & Annalu Waller (Supervisor)|
- Electronic personal health records
- Electronic records access
- Information technology