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

Carinci, Fabrizio; Štotl, Iztok; Cunningham, Scott; Poljičanin, Tamara; Pristaš, Ivan; Traynor, Vivie; Olympios, George; Scoutellas, Vasos; Azzopardi, Joseph; Doggen, Kris; Sándor, János; Ádány, Róza; Løvaas, Karianne Fjeld; Jarosz-Chobot, P; Polańska, Joanna; Prunǎ, S.; Lusignan, Simon de; Monesi, Marcello; Bartolo, Paolo Di; Scheidt‐Nave, Christa; Heidemann, Christin; Zucker, Inbar; Maurina, Anita; Lepiksone, Jana; Persson, Frederik; Arffman, Martti; Keskimäki, Ilmo; Guðbjörnsdóttir, Soffia; Iorio, Concetta Tania Di; Dupont, Elisabeth; Sabata, Stella de; Klazinga, Niek; Benedetti, M. Massi

doi:10.3389/fcdhc.2021.744516

Cited by 5 publications

(2 citation statements)

References 40 publications

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“…Electronic health records should be considered, whenever available, to assess the level of adherence to optimal care packages, as it can be used to identify high-risk patients. The approach here presented can be adopted by diabetes registries and data sources from different health systems [ 42 , 43 ] to extract comparable longitudinal cohorts and safely share essential information [ 44 – 46 ] to compare care packages under varying conditions.…”

Section: Discussionmentioning

confidence: 99%

Adherence to General Diabetes and Foot Care Processes, with Prompt Referral, Are Associated with Amputation-Free Survival in People with Type 2 Diabetes and Foot Ulcers: A Scottish National Registry Analysis

Meza-Torres

Cunningham

Heiß

et al. 2022

Journal of Diabetes Research

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Aims. To compare different packages of care across care providers in Scotland on foot-related outcomes. Methods. A retrospective cohort study with primary and secondary care electronic health records from the Scottish Diabetes Registry, including 6,845 people with type 2 diabetes and a first foot ulcer occurring between 2013 and 2017. We assessed the association between exposure to care processes and major lower extremity amputation and death. Proportional hazards were used for time-to-event univariate and multivariate analyses, adjusting for case-mix characteristics and care processes. Results were expressed in terms of hazard ratios with 95% confidence intervals. Results. 2,243 (32.7%) subjects had a major amputation or death. Exposure to all nine care processes at all ages ( HR = 0.63 ; 95% CI: 0.58-0.69; p < .001 ) and higher foot care attendance in people aged >70 years ( HR = 0.88 ; 0.78-0.99; p = .03 ) were associated with longer major amputation-free survival. Waiting time ≥ 12 weeks between ulceration and clinic attendance was associated with worse outcomes ( HR = 1.59 ; 1.37-1.84; p < .001 ). In people > 70 years, minor amputations were associated with improved major amputation-free survival ( HR = 0.69 ; 0.52-0.92; p = .01 ). Conclusions. Strict adherence to a standardised package of general diabetes care before foot ulceration, timely foot care after ulceration, and specific treatment pathways were associated with longer major amputation-free survival among a large cohort of people with type 2 diabetes in Scotland, with a larger impact on older age groups.

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Section: Discussionmentioning

confidence: 99%

Adherence to General Diabetes and Foot Care Processes, with Prompt Referral, Are Associated with Amputation-Free Survival in People with Type 2 Diabetes and Foot Ulcers: A Scottish National Registry Analysis

Meza-Torres

Cunningham

Heiß

et al. 2022

Journal of Diabetes Research

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“…Anyone involved in data collection must be aware of potential security issues and data protection requirements, including the General Data Protection Regulation (GDPR) [42] . There is also a risk that inadequate data quality, data access, data interoperability, and representativeness of data may foster health inequalities [13,43] .…”

Section: Optimising Use Of Datamentioning

confidence: 99%

Short- and longer-term goals for change – A report from the 2nd workshops of the EHC Think Tank Workstreams on Access Equity and Future Care Pathways

Gacser,

Skouw-Rasmussen,

Bourke

et al. 2023

The Journal of Haemophilia Practice

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Introduction The second series of workshops for the EHC Think Tank Workstreams on Access Equity and Future Care Pathways involved working towards consensus on addressing challenges to progress around achieving equitable access to care and shaping rare disease care pathways that meet patient needs while remaining practicable and affordable to healthcare providers. This report summarises workshop outcomes from these two workstreams, in which stakeholder participants identified a ‘guiding star’ determining the direction of ongoing focus, defined achievable ‘near star’ milestones, and enablers and constraints to achieving these. Guiding Stars The Access Equity Workstream proposed focusing on developing a healthcare system that enables patients to benefit from care and treatment fairly and impartially. The Future Care Pathways Workstream agreed that their focus would be on developing care pathways that provide the right intervention at the right time by the right healthcare professional in the right formats with a variety of delivery methods to suit the person. Near Stars For the Access Equity Workstream, changes in narrative and behaviour were the achievable milestones that the group agreed to prioritise. Greater stakeholder collaboration and consistent data collection and use will be important enablers for change. Participants proposed greater emphasis on investment and value (instead of cost and return) and a change of mindset from ‘fixing the patient’ to achieving a healthy life through early intervention and preventing comorbidities. However, lack of clarity over what constitutes ‘value’ and around stakeholders' responsibilities, limited outcome measures and resistance to change may constrain progress. A near star for the Future Care Pathways workstream was the development of seamless, personalised care pathways with integrated digital and AI-based technologies to enable real-time measurement of pathway effectiveness. Participants felt that understanding and respecting patient behaviour and the nudges and incentives needed to promote pathway acceptance will be important. As in the Access Equity Workstream, they recognised the role of routine, standardised data collection for measuring outcomes, sharing information and informing decision-making. They predicted that building trust between stakeholder groups (including patients, healthcare providers, academic and life science companies) and using patient networks and advocates effectively would enable collaboration and ensure that patient needs and insights are acted upon. However, financial and legal aspects, inadequate implementation of technological infrastructure, limited systems integration, and lack of stakeholder time, effort and energy are all potential constraints that will need to be addressed.

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SCORE2-Diabetes: 10-year cardiovascular risk estimation in type 2 diabetes in Europe

Pennells,

Kaptoge,

Østergaard

et al. 2023

European Heart Journal

100

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Aims To develop and validate a recalibrated prediction model (SCORE2-Diabetes) to estimate the 10-year risk of cardiovascular disease (CVD) in individuals with type 2 diabetes in Europe. Methods and results SCORE2-Diabetes was developed by extending SCORE2 algorithms using individual-participant data from four large-scale datasets comprising 229 460 participants (43 706 CVD events) with type 2 diabetes and without previous CVD. Sex-specific competing risk-adjusted models were used including conventional risk factors (i.e. age, smoking, systolic blood pressure, total, and HDL-cholesterol), as well as diabetes-related variables (i.e. age at diabetes diagnosis, glycated haemoglobin [HbA1c] and creatinine-based estimated glomerular filtration rate [eGFR]). Models were recalibrated to CVD incidence in four European risk regions. External validation included 217 036 further individuals (38 602 CVD events), and showed good discrimination, and improvement over SCORE2 (C-index change from 0.009 to 0.031). Regional calibration was satisfactory. SCORE2-Diabetes risk predictions varied several-fold, depending on individuals’ levels of diabetes-related factors. For example, in the moderate-risk region, the estimated 10-year CVD risk was 11% for a 60-year-old man, non-smoker, with type 2 diabetes, average conventional risk factors, HbA1c of 50 mmol/mol, eGFR of 90 mL/min/1.73 m2, and age at diabetes diagnosis of 60 years. By contrast, the estimated risk was 17% in a similar man, with HbA1c of 70 mmol/mol, eGFR of 60 mL/min/1.73 m2, and age at diabetes diagnosis of 50 years. For a woman with the same characteristics, the risk was 8% and 13%, respectively. Conclusion SCORE2-Diabetes, a new algorithm developed, calibrated, and validated to predict 10-year risk of CVD in individuals with type 2 diabetes, enhances identification of individuals at higher risk of developing CVD across Europe.

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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

Cited by 5 publications

References 40 publications

Adherence to General Diabetes and Foot Care Processes, with Prompt Referral, Are Associated with Amputation-Free Survival in People with Type 2 Diabetes and Foot Ulcers: A Scottish National Registry Analysis

Adherence to General Diabetes and Foot Care Processes, with Prompt Referral, Are Associated with Amputation-Free Survival in People with Type 2 Diabetes and Foot Ulcers: A Scottish National Registry Analysis

Short- and longer-term goals for change – A report from the 2nd workshops of the EHC Think Tank Workstreams on Access Equity and Future Care Pathways

SCORE2-Diabetes: 10-year cardiovascular risk estimation in type 2 diabetes in Europe

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