The novel method of privacy performance assessment realized in EUBIROD may improve the respect of privacy in each data source, reduce overall variability in the implementation of privacy principles and favour a sound and legitimate cross-border exchange of high quality data across Europe.

BackgroundMy Diabetes My Way (MDMW) is the National Health Service (NHS) Scotland website for people with diabetes and their carers. It consists of an interactive information website and an electronic personal health record (ePHR) available to the 291,981 people with diabetes in Scotland. We aimed to analyse the demographic characteristics of current registrants and system usage and activity during 2016.MethodsWe analysed system audit trails to monitor user activity and page accesses on the information website, and logins and activity within the ePHR. The ePHR contains data from SCI-Diabetes, NHS Scotland’s flagship diabetes record, sourcing data from primary and secondary care, specialist screening services and laboratory systems. We reviewed patient registration characteristics to collate demographic data for the MWDH cohort, then compared this to aggregate data published in the 2016 Scottish Diabetes Survey. The Scottish Diabetes Survey is an annual population-based report detailing diabetes statistics for the whole diabetes population in NHS Scotland.ResultsThe MDMW information website received an average of 101,382 page accesses per month during 2016 (56.9% increase from 2015; n = 64,607). ePHR registrants were more likely to be younger (p < 0.001) and have an ethnicity of “white” (p < 0.001) than the background diabetes population. At the end of 2016, 11,840 people with diabetes had accessed their personal clinical information (58.6% increase since end 2015; n = 7464). During 2016, an average of 1907 people accessed their records each month (48.3% increase from 2015; n = 1286).ConclusionMy Diabetes My Way is a useful tool aid to diabetes self-management. The service is unique in offering records access to a national population, providing information from all relevant diabetes-related sources, rather than a single silo. MDMW supports the diabetes improvement, self-management, healthcare quality and eHealth strategies of the Scottish Government. The service also has potential to be adapted to work with other clinical systems and conditions.

The development of data dictionaries and standards can be used to improve the quality and comparability of health information. A data dictionary has been developed to be compatible with other existing data sources for diabetes, within and beyond Europe.

My Diabetes My Way (MDMW) is an interactive website for people with diabetes and carers, with over 32,000 registrants in NHS Scotland. It contains multimedia resources for self-management and clinical records access (data from primary and secondary care, specialist screening services and laboratories). Features include: goal setting, communication tools and automated highly-tailored guidance based on results. We aimed to evaluate user experience, assess impact on outcome measures and model health economic benefits.