Strategic Forum: Data & Registries
Chair: Robert Heine, Distinguished Lilly Scholar, Lilly Corporate Center Indianapolis, USA
Member: Jeanette Soderberg, Jaivir Pall, Mette Due-Christensen, Massimo Massi Benedetti, Kamlesh Khunti, Helen Colhoun, Petra Wilson, Katerina Eeg-Olofsson, Guy Fagherazzi, Robert Haustein, Rogier Klok, Ola Vedin, Manel Mata, Thomas Danne, Fleur Levrat-Guillen
Background
Many regions in Europe lack quality of care data and lack any detailed breakdown of the crucial outcomes related to diabetes. Despite the 30-year interval since the St Vincent Declaration, and despite the major advances in the treatment options for all forms of diabetes (both with medications and technology), the overall quality of care and clinical outcomes remain sub-optimal.
Lack of data on quality of diabetes care and outcomes in Europe is one of the most serious obstacles to progress. Moreover, there is the challenge of defining and agreeing what outcomes should be measured and ensuring that patient-related outcomes are included.
Without current and accurate quality data and some level of benchmarking, it will be impossible to document progress. This is highlighted in the EUDF Call to Action, where it states that one key solution is to “align on the ambition to improve outcomes, by measuring and registering outcomes”.
Objectives & Directions for Solutions
Align on the ambition to improve outcomes, by measuring and registering outcomes
- Facilitate an aligned understanding between the EUDF stakeholders on the need to base the future of diabetes management on measurable outcomes
- Set European and national specific and numerical targets for improving diabetes related outcomes, including mortality
- Set a specific focus on the prevention of long-term cardiovascular outcomes of diabetes
- Facilitate the introduction of standard outcome sets and registries across Europe
- Increase the overall focus on value-based healthcare
- Prepare recommendations on the establishment of data gathering and registries at a European level and provide guidance for regional/national translation
Diabetes Registries: Enabling high quality diabetes care
Diabetes registries, which collect, track, and analyse patient data on parameters ranging from clinical characteristics, risk factor control indicators, diabetes complications, and treatments, can become an essential tool for improving the quality of diabetes care and securing better outcomes for people with diabetes when integrated in the diabetes care system.
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Viewpoint Story by Robert Heine
Robert Heine talks about the mandate of the EUDF Strategic Forum on Data & Registries to craft recommendations on how to better use data registries in Europe to understand diabetes-related complications and to improve quality of care and to raise awareness.
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Learnings from the SWEET Registry
Professor Thomas Danne, SWEET Chairman, ISPAD EUDF Delegate, Children´s Hospital AUF DER BULT, Hannover, Germany reports about the SWEET Registry at the virtual EASD Annual Meeting 2021.
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Learnings from the Diabetes Registry and Diabetes Research Platform in Scotland
Helen Colhoun, AXA Chair in Medical Informatics & Epidemiology at the University of Edinburgh, reports about the Diabetes Registry and Diabetes Research Platform in Scotland at a meeting of the Belgian Diabetes Forum.
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Learnings from the National Diabetes Registry in Sweden
Katarina Eeg-Olofsson, Director of the Swedish National Diabetes Register, reports about the National Diabetes Registry in Sweden at a meeting of the Belgian Diabetes Forum.
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Learnings from the Hong Kong Diabetes Register for Europe
As part of the EUDF workstream on Data & Registries, Professor Juliana CN Chan from the Chinese University of Hong Kong reports about the Hong Kong Diabetes Register.
Interesting Literature
Improving outcomes for people with diabetes - The role of health data, access to innovation and rethinking care
EFPIA event in European Parliament - November 2019
Define, track, measure and improve - How health data and registries can help improve health outcomes for people with diabetes
EFPIA Round Table in Sweden - June 2019