A taxonomy of indicators for non-communicable diseases: agreement, definition, and contextual description using diabetes as a case study

Background The collaborative health information European framework (CHIEF) is an initiative of the European Commission’s Directorate-General for Health and Food Safety (DG SANTE) coordinated by the Joint Research Centre (JRC) to enable a sustainable data collection and production of indicators to monitor and evaluate best practices for people with NCDs. Objectives We aimed to support international assessment and comparability of NCD indicators through the following: a) taxonomy of NCD indicators; b) core set of measurable diabetes indicators; c) high-level policy recommendations. Materials and Methods The study is an expert review run by the multidisciplinary expert group “CHIEF-diabetes.dwg” between 2022-2024. The group convened on various occasions, including remote and in-presence meetings. A relevant list of essential references and diabetes indicators used by international organisations were shared in preparation of the meetings to underpin collective discussions. Following an iterative approach, the group agreed on the fundamental criteria and steps involved in the selection process, until agreement was reached for the selection of indicators and definition of final recommendations. Results A taxonomy of NCD indicators and the associated stakeholders were identified to guide the evaluation of available indicators and drive consensus in the selection process. A core set of diabetes indicators was agreed, including: diabetes incidence and prevalence rate, retinopathy prevalence rate, major lower extremity amputation incidence rate, blindness rate and rate of end stage renal disease. Considerations on measurement issues across chronic diseases and data collection were gathered as a basis for recommendations to the EU. Discussion The taxonomies and core set of diabetes indicators identified by the expert group could be used as a proof of concept for the applicability of the framework outlined by CHIEF. In response to the objectives specified at the outset, the expert group made the the following recommendations: a) to determine the purpose of NCD indicators in advance; b) to prioritise indicators that are actionable for the high-level governance of chronic diseases and related healthcare services; c) to align with existing standardisation processes at the international level; d) to build on the experience of existing European registry initiatives; and e) to seek alignment with the broader strengthening of the data infrastructure in EU member states. Conclusions The expert group CHIEF-diabetes.dwg has delivered general guidance on criteria and principles for the selection of NCD indicators, using diabetes as a case study. The core set of six diabetes indicators can be used as a field-test for future reporting initiatives. In the heterogeneous context of national health information systems, disease registries can help in the provision of high-quality data that is needed to compute reliable NCD indicators. Although limited to only one disease, our approach is general and potentially useful for the future implementation of the European Health Data Space. Further activities and targeted research projects are needed to specify the details of a cohesive health information system of NCD indicators.

CARINCI Fabrizio;  POLJIČANIN Tamara;  CUNNINGHAM Scott;  FAVA Stephen;  STOTL Iztok;  LEPIKSONE Jana;  NICHOLSON Nicholas;  MASSI BENEDETTI Massimo;  KLAZINGA Niek; 

2025-10-14

FRONTIERS MEDIA SA

JRC143308

2296-2565 (online),   

https://www.frontiersin.org/journals/public-health/articles/10.3389/fpubh.2025.1685731,    https://publications.jrc.ec.europa.eu/repository/handle/JRC143308,   

10.3389/fpubh.2025.1685731 (online),