My Diabetes My Way (MDMW) is the NHS Scotland interactive website for people
with diabetes and their carers. It contains multimedia resources aimed at
improving self-management, including traditional information leaflets, interactive
educational tools, videos describing diabetes-related complications and testimonials from people with diabetes
talking about their experiences. MDMW also offers users access to their clinical data via its novel electronic
personal health record (ePHR). The ePHR sources data from primary care, secondary care, specialist screening
services and laboratory systems; including diagnostic information, demographics, process outcomes, screening
results, medication and correspondence. These data provide a more complete overview of diabetes than is available
from any single data source. Over 9,000 patients across Scotland have logged in and user evaluation shows that
they find it a useful tool to aid self-management by improving knowledge and motivation to make positive changes.
In 2008, a report by Diabetes UK estimated that diabetes accounted for around 10% of NHS expenditure,
equating to £9bn per year, or £1m every hour. This was double a 2001 estimate (Department of Health,
2001), showing the impact of a rising prevalence across the UK. A subsequent report in Diabetic Medicine
predicts NHS annual spending on diabetes will increase from £9.8 to £16.9bn by 2035, reaching 17%
of the entire NHS budget. The challenge of supporting self-management in the expanding population
of people with diabetes can be assisted through the use of technology, for example, by improving
learning and education, much of which can be facilitated electronically. Internet based self-management
support and electronic personal health records (ePHRs) have the potential to change the balance of
power from healthcare providers to healthcare users and reduce the burden of care – but most existing
ePHR systems present data residing on single silos, such as GP systems or hospital clinic records.
To assess the levels of usage and uptake of the MDMW ePHR. To find out users' opinions and experiences of
online diabetes data access and to assess the impact on routine clinical outcomes for MDMW ePHR users.
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