Mortality indicators in international health monitoring – - PowerPoint Presentation

1. Mortality indicators in international health monitoring – room for improvement from Nordic, European and global perspective?Mika Gissler, Professormika.gissler@thl.fi

2. BackgroundRecord keeping has a long tradition in the Nordic countries. These five countries – Denmark, Iceland, Finland, Norway and Sweden – have based their health information systems on registers, which cover the total population. Examples of computerised national health registers include:cancer registers (from the 1940s) registers on infectious diseases (from the 1950s) hospital discharge registers (from the 1960s) cause-of-death registers (from the 1960s) birth and birth defect registers (from the 1960s)health care quality registers (from the 1990s) primary health care registers (from the 2010s)Professor Mika Gissler29/03/20232

3. Cause-of-death statistics in FinlandThe first national death statistics was collected in 1749, when the oldest national population information system was initiated in Sweden. Statistics Finland has produced cause-of-death statistics since the year 1936. The source material of the statistics is the death certificates written by the physicians. The local coding is controlled by regional medical officers at THL Finnish Institute for Health and Welfare and by medical experts at Statistics Finland. The data are supplemented with and verified against data on deaths from the Population Information System at the Digital and Population Data Services Agency. The cause-of-death classification has followed the national versions of ICD-classifications since ICD-4. ICD-10 was introduced in 1996 and ICD-11 approximately in 2026-2027.Professor Mika Gissler29/03/20233

4. Problems with cause-of-death statistics: codingCase 1: For a long time, the coders of causes-of-death had no medical qualifications. When medical experts started to code causes-of-death, the maternal mortality ratio more than doubled in Finland from 242 per 100 000 live births in 1935 to 543 per 100 000 live births in 1936. Professor Mika Gissler29/03/20234

5. Problems with cause-of-death statistics: codingCase 2: In one European country the coding was made by groups of medical students, and the coding crews were changed every six months. This caused substantial variation in coding praxis and affected for example standardised mortality rate for diabetes. For population aged 0-64 years, the three-year average and standard deviation changes from 3.0/100 000 and 0.7/100 000 (new praxis) to 3.7/100 000 and 0.3/100 000 (old praxis). Professor Mika Gissler29/03/20235

6. Problems with cause-of-death statistics: codingCase 3: Even though there are earlier classifications of diseases1, different versions of ICD (International Classification of Diseases) have been available since 1893. After a change in the WHO coding rules in 2005 coding of pneumonia was substantially reduced as an underlying cause in Finland. Chronic disease mentioned in the death certificate is currently recorded as the person's underlying cause of death instead of pneumonia.Professor Mika Gissler29/03/202361 For example by François Boissier de Sauvages (1731), Carl von Linné (1763), and William Cullens (1785).

7. International problems with cause-of-death statisticsInternational comparisons are important to benchmarking one country to similar countries. Several international organisations collect and disseminate health statistics. Mortality statistics is an important part of international databases. However, some problems related to these comparisons need to be highlighted:Since international databases do not use the same standard populations, mortality statistics cannot be compared between databases. The second problem is poor timeliness. More than five years old data are not very useful for policy, planning, research or other purposes. Professor Mika Gissler29/03/20237Mortality data availability (Feb 2023)Data sourceNumber of countriesLatest dataEurostat34 countries2018-2021OECD46 countries2016-2020WHO51 countries2007-2020

8. Success story 1: Nordic-Baltic collaborationThe Nordic Collaborating Centre for Classifications in Health Care was established in 1986. One of its main tasks has been to co-ordinate classification practices for mortality statistics in the region. To estimate the impact of differing coding practices on the regional mortality statistics, the Centre has organized continuing coding comparisons between the Nordic and Baltic countries since 2001. The Centre collects a random sample of actual death certificates, translated into English, from all eight countries in the region: Denmark, Estonia, Finland, Iceland, Latvia, Lithuania, Norway, and Sweden. The Centre then summarizes and disseminates the results.  Professor Mika Gissler29/03/20238

9. Success story 1: Nordic-Baltic collaborationThe collaboration has demonstrated that the national coding systems have disagreed on the selection of the underlying cause both between themselves and with Automated Classification of Medical Entities (ACME). There has been a trend towards greater agreement. This trend towards greater agreement can be seen not only for the agreement in general, but also for specific diagnostic groups, such as cancers (neoplasms), external causes and respiratory conditions.Professor Mika Gissler29/03/20239

10. Success story 2: Data collection at European levelMost of the international data collection is based on voluntary data collection. In the European Union, however, the European Parliament and the Council has adopted Regulation 1338/2008 on Community statistics on public health and health and safety at work, which makes the collection of statistics on causes-of-death mandatory for the Member States. The Regulation is designed to ensure that health statistics provide adequate information for all EU Member States to monitor Community actions in the field of public health and health and safety at work. The Regulation lists several domains for which implementing regulations specifying in detail the list of variables and methodological aspects were or are to be developed.Professor Mika Gissler29/03/202310

11. Success story 2: Data collection at European levelFor causes-of-death the Implementing Regulation (Regulation (EU) No 328/2011 on statistics on causes of death) sets the framework for data collection. This includes relevant information, including information on national differences regarding definitions, coverage of data, the ICD revision and updates used and the automated coding systems, as well as information about the selection and modification of the underlying cause of death, shall be transmitted by Member States to the Commission (Eurostat). The data have been collected since 2011. For timeliness it is important that Member States have to provide the data specified in this Regulation to the Eurostat within 24 months after the end of the reference year. Increasingly, data are sent to Eurostat within 18 months.Professor Mika Gissler29/03/202311

12. Why register-based health information systems are superior?There are several reasons behind the strong register culture in the Nordic countries.There is a long tradition to collect public information: population statistics have been collected more than 250 years and health statistics more than 150 years.Unique personal identity codes were introduced early for all citizens and permanent residents: in 1947 Sweden, in 1953 Iceland, in 1964 Finland and Norway, and in 1968 Denmark. The existence of such codes and their use in the register keeping improves the completeness and quality of any statistics and augments the available information, for example on the aggregation of service utilisation before death. Several data quality studies, including the registration of causes-of-death, have shown the high quality of routinely collected registers.Professor Mika Gissler29/03/202312

13. ReferencesGissler M, Haukka J. Finnish health and social welfare registers in epidemiological research. Norsk Epidemiologi 2004; 14: 113-20.Gissler M, Dumitrescu A, Addor V. Improving the performance of National Health Information Systems: the 2002-2003 reform in Finland from an international perspective. World Health Organization 2005. EUR/05/5046412. Available at: http://apps.who.int/iris/bitstream/10665/107688/1/E88075.pdf. Gissler M, Tuomi-Nikula A. The role of health interview surveys, health examination surveys and disability surveys for measuring the health dimension. Stat J IAOS 2014; 30: 225-9.Kilpeläinen K, Parikka S, Koponen P, Koskinen S, Rotko T, Koskela T et al. Finnish experiences of monitoring and evaluation of health determinants: local monitoring for improving national policy. Global Health Action 2016, 9: 28824.Tolonen H, Koponen P, Al-Kerwi A, Capkova N, Giampaoli S, Mindell J et al. European health examination surveys - a tool for collecting objective information about the health of the population. Arch Public Health 2018; 76: 38.Gissler M. Routinely collected registers in Finnish health research. In book: Alho J (Ed): Statistics, Registries, and Science - Experiences from Finland. Statistics Finland. Keuruu: Otava 1999. p 241-54.Furu K, Wettermark B, Andersen M, Martikainen JE, Almarsdóttir AB, Sørensen HT. The Nordic countries as a cohort for pharmacoepidemiological research. Basic Clin Pharmacol Toxicol 2010 106: 86-94.THL: Primary health care register. https://thl.fi/en/web/thlfi-en/statistics/information-on-statistics/register-descriptions/register-of-primary-health-care-visits. Johansson, LA, Korpi H, Pedersen AG: Nomesco Report on Mortality Statistics for the Nordic/Baltic Countries - Theme section 2010. Copenhagen 2010. http://norden.diva-portal.org/smash/record.jsf?pid=diva2%3A970697&dswid=-4565Irgens LM, Bjerkedal T. Epidemiology of leprosy in Norway: the history of the National Leprosy Registry of Norway from 1856 until today. Int J Epidemiol 1973; 2: 81-9. Lahti RA, Penttilä A. Cause-of-death query in validation of death certification by expert panel; effects on mortality statistics in Finland, 1995. Forensic Sci Int. 2003 Jan 28;131(2-3):113-24. European Commission. Special Eurobarometer 2015: 431 Data protection. 2015.Professor Mika Gissler29/03/202313

14. THL mission: We promote the welfare, health and safety of the population, prevent diseases and social problems, and develop the welfare society.THL - worthy of your trust: Responsibly boldWe can. We try. We renew. Humane interactionsWe value. We listen. We discuss. Pioneer in equalityWe engage. We encourage. We challenge.Professor Mika Gissler29/03/202314