Recommendations to plan a national burden of disease study

Abstract

Abstract Background The InfAct (Information for Action) project is a European Commission Joint Action on Health Information which has promoted the potential role of burden of disease (BoD) approaches to improve the current European Union-Health Information System (EU-HIS). It has done so by raising awareness of the concept, the methods used to calculate estimates and their potential implications and uses in policymaking. The BoD approach is a systematic and scientific effort to quantify and compare the magnitude of health loss due to different diseases, injuries, and risk factors with estimates produced by demographic characteristics and geographies for specific points in time. Not all countries have the resources to undertake such work, and may therefore start with a more restricted objective, e.g., a limited number of diseases, or the use of simple measures of population health such as disease prevalence or life expectancy. The main objective to develop these recommendations was to facilitate those countries planning to start a national burden of disease study. Results These recommendations could be considered as minimum requirements for those countries planning to start a BoD study and includes following elements: (1) Define the objectives of a burden of disease study within the context of your country, (2) Identify, communicate and secure the benefits of performing national burden of disease studies, (3) Secure access to the minimum required data sources, (4) Ensure the minimum required capacity and capability is available to carry out burden of disease study, (5) Establish a clear governance structure for the burden of disease study and stakeholder engagement/involvement, (6) Choose the appropriate methodological approaches and (7) Knowledge translation. These were guided by the results from our survey performed to identify the needs of European countries for BoD studies, a narrative overview from four European countries (Belgium, Germany, The Netherlands and Scotland) and the summary of a comparative study of country health profiles with national health statistics. Conclusions These recommendations as minimum requirements would facilitate efforts by those European countries who intend to perform national BoD studies.