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

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


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Learnings from the Hong Kong diabetes register for Europe

As part of the EUDF workstream on Data & Registries, Professer 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