A Longitudinal Perspective on User Uptake of an Electronic Personal Health Record for Diabetes, With Respect To Patient Demographics

Abstract

Introduction: The growing prevalence of diabetes has increased the need for scalable technologies to improve outcomes. My Diabetes My Way (MDMW) is an electronic personal health record (ePHR) available to all people with diabetes in Scotland since 2010, associated with improved clinical outcomes among users. MDMW pulls data from a national clinician-facing informatics platform and provides self-management and educational information. This study aims to describe MDMW user demographics through time with respect to the national diabetes population, with a view to addressing potential health inequalities. Methods: Aggregate data were obtained retrospectively from the MDMW database and annual Scottish Diabetes Survey (SDS) from 2010 to 2020. Variables included diabetes type, sex, age, socioeconomic status, ethnicity, and glycemic control. Prevalence of MDMW uptake was calculated using corresponding SDS data as denominators. Comparisons between years and demographic sub-groups were made using Chi- Squared tests. Results: Overall uptake of MDMW has steadily increased since implementation. By 2020, of all people with T1D or T2D in Scotland, 13% were fully enrolled to MDMW (39,881/312,326). There was proportionately greater numbers of users in younger, more affluent demographic groups (with a clear social gradient) with better glycemic control. As uptake has increased through time, so too has the observed gaps between different demographic sub-groups. Conclusions: The large number of MDMW users is encouraging, but remains a minority of people with diabetes in Scotland. There is a risk that innovations like MDMW can widen health inequalities and it is incumbent upon healthcare providers to identify strategies to prevent this.

Continuing the quality improvement of an electronic personal health record and interactive website for people with diabetes in Scotland (My Diabetes My Way)

“…Overall, this produced a significant difference in SES between respondents and non‐respondents (Chi square, p < 0.001). This finding echoes MDMW use in the background diabetes population, with those in the least deprived groups being more likely to engage with the platform 22 …”

“…In the background population (Scottish Diabetes Survey [SDS] data), 11% of PWD have Type 1 diabetes, and 89% have Type 2 diabetes. 22 A total of 2936/4652 (63%) of respondents were men and 1716 (37%) were women. Non-respondents (59%) were men, and men were significantly over-represented as respondents (p < 0.001).…”

“…Users with Type 2 diabetes were significantly over‐represented in the questionnaire compared to non‐respondents (82% of respondents had Type 2 diabetes, whereas only 72% of non‐respondents had Type 2 diabetes ( p < 0.001)). In the background population (Scottish Diabetes Survey [SDS] data), 11% of PWD have Type 1 diabetes, and 89% have Type 2 diabetes 22 …”

“…Non‐respondents (59%) were men, and men were significantly over‐represented as respondents ( p < 0.001). In the background diabetes population, 56% of PWD are men (SDS data) 22 …”

Making Use of Comparable Health Data to Improve Quality of Care and Outcomes in Diabetes: The EUBIROD Review of Diabetes Registries and Data Sources in Europe

“…The infrastructure can be rapidly scaled up to incorporate innovative approaches that are revolutionising the way population-based registers are linked to personal data e.g. those captured via smartphone apps ( 49 ). The possibility to provide access to micro-aggregate data extracted from such common data models across Europe would represent an ideal case study for the implementation of the European Health Data Space ( 50 ).…”