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.

Background: Registries and data sources contain information that can be used on an ongoing basis to improve quality of care and outcomes of people with diabetes. As a specific task of the EU Bridge Health project, we carried out a survey of diabetes-related data sources in Europe. Objectives: We aimed to report on the organization of different sources of diabetes information, including their governance, information infrastructure and dissemination strategies for quality control, service planning, public health, policy and research. Methods: Survey using a structured questionnaire to collect targeted data from a network of collaborating institutions managing registries and data sources in 17 countries in the year 2017. Results: The 18 data sources participating in the study were most frequently academic centres (44.4%), national (72.2%), targeting all types of diabetes (61.1%) covering no more than 10% of the target population (44.4%). Although population-based in over a quarter of cases (27.8%), sources relied predominantly on provider-based datasets (38.5%), fewer using administrative data (16.6%). Data collection was continuous in the majority of cases (61.1%), but 50% could not perform data linkage. Public reports were more frequent (72.2%) as well as quality reports (77.8%), but one third did not provide feedback to policy and only half published ten or more peer reviewed papers during the last 5 years. Conclusions: The heterogeneous implementation of diabetes registries and data sources hampers the comparability of quality and outcomes across Europe. Best practices exist but need to be shared more effectively to accelerate progress and deliver equitable results for people with diabetes.

Improving quality care for diabetes in the community: What do Cypriot patients want?

OBJECTIVE: To measure patient preferences for their diabetic care in community setting. DESIGN: Discrete-choice survey. SETTING: Community setting (primary physician and hospital sites) in Cyprus. PARTICIPANTS: Diabetic patients attending community sites. MAIN OUTCOME MEASURE(S): Patient preferences, to estimate which components of quality healthcare service people value, their relative importance but also the potential shift to shared decision-making (SDM). RESULTS: Older respondents with experience of the private sector already received SDM (managing their care and choosing their treatments; detailed and accurate information, continuity of care; compassion for their personal situation) from their primary care physician with waiting time shorter than 1 h. They valued their 'current' option and they did not want to change it with other services. Younger people from the public sector valued a change in policy and wanted to move from their 'current' to alternative diabetic care services where the waiting times were shorter, they could not only manage their care but also choose their treatments (together with receiving information, continuity of care and compassionate care). Individuals agreed with receiving multidisciplinary care from a team of healthcare providers but they mostly preferred being supported by their primary care physician. The pooled sample valued their 'current' option but they also supported policy changes that would implement SDM service for everybody. CONCLUSIONS: Diabetic patients value SDM and are willing to support a shift of practice to receive it not only in the private but also in the public sector. The forthcoming National Health Insurance Service would aim to address such developments as anticipated both in the European Troika's recommendations and the relevant laws.

Implementing shared-decision-making for diabetes care across country settings: What really matters to people?

CONTEXT: Growing evidence of improved clinical outcomes and patient/professional satisfaction supports shared-decision-making (SDM) services as an effective primary care interventions for diabetes. However, only a few countries have actually adopted them (e.g. England). In other European countries (e.g. Cyprus) there is awareness that patients play a crucial role in decision-making, and SDM services could be considered as innovative strategies to promote the actual implementation of patient rights legislation and strengthen primary care. OBJECTIVE: to understand preferences of people with diabetes when choosing their care, and how they value alternative SDM services compared to their 'current' option. Preferences were collected from patients based in England, where SDM is already in place at national level, and Cyprus, where people are new to it, using a discrete-choice-experiment (DCE) survey. RESULTS: Cypriots valued choosing alternative SDM services compared to their 'current' option, whereas the English preferred their status quo to other services. Having the primary-care-physician as healthcare provider, receiving compassionate care, receiving detailed and accurate information about their care, continuity of care, choosing their care management and treatment, and reduced waiting time were the SDM characteristics that Cypriots valued; the English preferred similar factors, apart from information/continuity of care. CONCLUSION: People with diabetes do value SDM and different SDM models may fit different groups according to their personal experience and country specific settings.

Cross-border flow of health information: is 'privacy by design' enough? Privacy performance assessment in EUBIROD.

BACKGROUND: The EUBIROD project aims to perform a cross-border flow of diabetes information across 19 European countries using the BIRO information system, which embeds privacy principles and data protection mechanisms in its architecture (privacy by design). A specific task of EUBIROD was to investigate the variability in the implementation of the EU Data Protection Directive (DPD) across participating centres. METHODS: Compliance with privacy requirements was assessed by means of a specific questionnaire administered to all participating diabetes registers. Items included relevant issues e.g. patient consent, accountability of data custodian, communication (openness) and complaint procedures (challenging compliance), authority to disclose, accuracy, access and use of personal information, and anonymization. The identification of an ad hoc scoring system and statistical software allowed an overall quali-quantitative analysis and independent evaluation of questionnaire responses, automated through a dedicated IT platform ('privacy performance assessment'). RESULTS: A total of 18 diabetes registers from different countries completed the survey. Over 50% of the registers recorded a maximum score for accountability, openness, anonymization and challenging compliance. Low average values were found for disclosure and disposition, access, consent, use of personal information and accuracy. A high heterogeneity was found for anonymization, consent, accuracy and access. CONCLUSIONS: 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.