2014 Regional Mortality Meeting

Transcription

1 1 8 September Regional Mortality Meeting National Institute for Health Development (Tervise Arengu Instituut), Hiiu 42, Tallinn Monday 2 June (9:30-16:30) 1. Opening of meeting Gleb Dennisov welcomed the participants to the meeting. There were 26 participants from Denmark (Claudia Ranneries, Solvejg Bang, Lise Lykke Werner, Kirsten Stahr), Estonia (Causes of Death Registry: Gleb Dennisov, Mare Laigo, Maret Sermat; Estonian Medical Birth Registry: Kärt Allvee; Estonian Cancer Registry: Margit Mägi, Pille Hämaorg; Estonian Tuberculosis Registry: Piret Viiklepp; Department of Health Statistics: Merike Rätsepp; Estonian Forensic Science Institute: Jana Tuusov, Mailis Tõnisson), Finland (Airi Pajunen, Raija Maljanen), Iceland (Lilja Sigrún Jónsdóttir), Norway (Anne Gro Pedersen, Grethe Westby, Gunvor Østevold), Sweden (Katarina Baatz, Helen Flythström, Eva Strand), Nomesco (Jesper Munk Marcussen), and the Nordic Collaborating Centre for Classifications in Health Care (Lars Berg, Lars Age Johansson). 2. Current mortality statistics: Short presentation by each country (latest published data year, interesting trends, ongoing projects...) Estonia: High emigration and low birth rate contribute to decline in population numbers. Overall mortality rate is declining due to decline in circulatory and external cause mortality, but cancer mortality remains stable. The 2013 data will be released soon. Since 2004 the demographic data on the deceased has been taken directly from the population registry. Automatic coding systems are used for quality control; ACME since 2005 and Iris since There have been advanced plans for electronic data collection since 2005, but the project is at standstill because of funding problems. [Please also refer to Gleb's presentation.] Sweden: The 2013 data will be published in August, and latecomers for 2012 will also be added to the register. After follow-up and reminders, about 1% of certificates are missing. This year Sweden will send data on non-resident deaths to Eurostat for the first time. Trends: the decrease in cardiovascular deaths continues, and there is a big increase in dementia. Lung cancer in women is stable, but there is a general increase in cancer deaths. In 2012 Sweden had the highest number of drug-related deaths ever. There is an ongoing project on electronic certification, but some problems have emerged (see item 8.1). [Please also refer to Eva's notes.] Norway: The mortality statistics have moved to the Institute of Public Health. The computer systems are working but not fully developed yet. For example, there is no function for requesting missing death certificates. Hopefully, the 2013 data will be published this year, but it is not quite sure. Iris is used for production coding. It works reasonably well, but there is a need to develop the dictionary more. The electronic certification project was halted temporarily but is now being re-launched. The aim is to have the system up and working by the end of 2016.

2 [Please also refer to Anne Gro's notes] Denmark: The mortality statistics are now at the Statens Serum Institute. The 2012 data were published in December, about 4% of certificates were missing. There is a decrease in general mortality, but an increase in suicide. There is also a small increase in perinatal deaths, and also a small increase in congenital anomalies (Q00-Q99). There is an ongoing project in reducing the number of missing certificates. The electronic certification works well, and there are plans to introduce Iris at Statens Serum Institute. [Please also refer to Claudia's notes] Iceland: There are still some problems with the transfer of the register from Statistics Iceland to the Directorate of Health. The 2012 deaths are coded but not published. Plans for mortality coding are to code all missing years and publish 2012 and 2011 in the year Preparations of an electronic certificate are underway and will possibly be introduced next year. There is no resident forensic pathologist in Iceland, which might affect trends in external causes of death. [Please also refer to Lilja's notes] Finland: The 2012 data were published in December, and there were now more missing certificates than before. The 2013 data will be released in December 2014 and after the first check about 7 % of 2013 certificates are still missing. It is more than at about the same time a year ago. Reporting is delayed because of a lack of pathologists. Certification is still paperbased. The electronic certificate has been delayed but will be introduced this autumn as a part of the forensic reporting system. The death certificates are scanned and typed and then coded by a coding system developed at Statistics Finland, which processes about 70% of the certificates automatically. Currently Statistics Finland has only one coder. The suicide rate is decreasing, but alcohol deaths are increasing. [Please also refer to Airi's notes] Nomesco: There is an ongoing project on social differences in mortality (social strata indicated by education level). There is also a project on indicators related to welfare state provisions in relation to mortality; mainly suicide and alcohol-related deaths. [Please also refer to Jesper's notes] Latvia (report from Sniedze Karlsone): Our institution's website can be found (Statistics) and retrieve data from the annual compilation of health care statistics Statistical Yearbook of Health Care in Latvia 2012 The yearbook consists of the following main chapters: Public Health, Health Care, Health Care Resources, Maternal and Child Care, Mortality, as well as information on regions. The Central Statistical Bureau of Latvia has performed population recalculation for the period from 2001 to 2011 according to Population Census. Therefore, also the yearbook includes recalculated indicators for the period from 2001 to 2011 According to data from the 2013 population, in July, the website will be prepared (and printed matter too) data on 2013, including data of mortality. Absolute figures for the year 2013 is now available (Overall, the 2

3 mortality little less than in 2012 for the present - absolute figures , to year; circulatory diseases without significant changes; growing death rate from respiratory diseases; malignant neoplasms on the previous year's level; external causes slightly decreased). There in the home page under the "Database" is obtainable information: -Tobacco Products Database -DPS - Latvian health and health care indicators database -SVMZS - Public Health Database -From January 1, 2014, available updated ICD-10 classification -Previous ICD-10 classification version -ICD-10 Classification of Tumors in morphological nomenclature codes If there is interest, a lot of questions and a sufficient number of participants, Disease Prevention and Control Centre is considering to organize thematic seminars for ICD-10 and the use of "medical certificate of cause of death" certification. To improve data quality, we are met with hospital doctors on-site, pointing to specific defects in their certification For reporting mortality statistics Causes of Death data to Eurostat, according to the Commission Regulation EU No 328/2011, is prepared and used a new perinatal certificate for stillbirths and neonatal data file. In early May ended project- medical causes of death certificates quality control study of circulatory disease certification. Currently results are summarized in draft version. We cooperate with a variety of registers (Oncology, Tuberculosis, Drug and alcohol abuse, Diabetes mellitus), and use the National Health Service Management Information System Patient registry information for clarification of diagnosis. Lithuania (report from Vilė Cicėnienė): In 2013 mortality in Lithuania has increased. This was an increase by 1.4 percent since The most common cause of death for both genders for many years are the same (circulatory system diseases, malignant neoplasms, external causes). Also the number of suicides has increased in 2013 (by 17 percent as compared to 2012). The data of causes of death for 2013 will be published in August 2014 by Institute of Hygiene in the yearly report "Causes of death 2013". In Lithuania an electronic death certificate is being developed as a part of the e-health project which probably will be completed by the end of The Nordic Classification Centre: Current activities and perspectives for the future [Please also refer to Lars B's presentation.] Lars B presented the activities of the Nordic Classification Centre. The Centre has two main tasks: to act as Nordic centre and coordinate health care classifications between the Nordic Countries; and to act as a collaborating centre in relation to WHO. Lars B is head of Centre (part time at 36%), Lilien Telfer is administrator (20%), Gunvor Østevold and Lars Age Johansson are experts on classification of mortality; Olafr Steinum on classification of morbidity; Solvejg Bang and Anne-Helene Almborg on ICF. The centre has a WHO designation as collaborating centre for , and there is an agreement between the Nordic countries on funding covering the period The 3

4 current work plan covers the same period. Preparations for the next period, , will start in mid Currently, the Centre is active in the following areas: - ICD-11: Revision Steering Group (RSG), Revision Steering Group Small Executive Group (RSG-SEG), several Topic Advisory Groups (TAG): mtag for mortality, mbtag for morbidity, ftag for functioning. - International Classification of Functioning (ICF): updates, ontology - International Classification of Health Interventions (ICHI): ongoing development - There has been less activities relating to Nordic classifications in the last few years. There have been no joint updates to the NOMESCO Classification of Surgical Procedures (NCSP) since There are no updates planned for the NOMESCO classification of External Causes of Injury (NCECI). The last update was in The Centre might arrange morbidity coding seminars, on the pattern of the mortality seminars. - In relation to WHO, the centre functions as a reference group for WHO classifications. The centre participates in the WHO-FIC network, and Lars B co-chairs the advisory Council. The Centre also participates in several WHO-FIC committees and reference groups. 4. ICD: Plans concerning ICD-11 [Please also refer to Lars B s presentations] Lars B presented the ICD-11 work plan, as envisaged by the WHO team. Several tasks are on the list, among others generating linearizations (there is now a joint linearization for morbidity and mortality), peer reviews of completed sections (about half of the required number of referees is still missing), develop reference guide (~ Volume 2), develop alphabetical index. A beta proposals mechanism should be set up, and there will be beta field trials. ICD-11 should appear in multiple languages, and the transition from ICD-10 to ICD-11 must be prepared. According to the time plan, the JLMM (joint linearization for morbidity and mortality) will be frozen by 31 May, and all comments and suggestions should be based on the version. The reference guide exists as in initial draft. An alphabetical index has been developed, but not reviewed. There has also been pilot interviews as regards preparations for ICD-11. According to the plan, the field trials should be completed by October 2014, and more interviews as well. The peer review is to be finished by June A "submission package" will be presented by 1 November 2016, and after final review sent to the World Health Assembly on 1 March Following the WHA's approval (May 2017), ICD-11 will be released in November The field trials might be difficult to carry out without translations. The "evaluation strategy" should focus on advantages of ICD-11 over ICD-10: why should users change to the new 4

5 classification, which are the benefits in relation to costs. It is not clear who will carry out the various studies suggested. [Please also refer to Lars Age's presentation] Lars Age gave a summary of the various tasks and assessments carried out by the mortality TAG. Discussion: The purpose of ICD-11 has never been defined, although the mtag and mbtag have requested a statement defining the purpose and target groups of ICD-11. Most effort and resources have been spent on developing IT infrastructure and amassing terms for the "foundation layer" (FL). FL has about 19,000 concepts. But the code structure (hierarchy) is lacking, and it cannot be created automatically. In addition, the actual codes keep changing because they are dependent on the identity numbers of the terms in the FL, and each time something in the FL is changed, the codes change as well. Repeated requests from users of ICD-10 to have "codes that we can recognize" have been ignored. No data has been made available regarding the number of codes that have changed or been added to ICD-10 since its publication. The Foundation Layer should allow additions and subtractions without the code assignment system being disrupted. No experts in public health and epidemiology have been involved, except on a voluntary basis as members of the mtag and mbtag. The different subject areas of the FL ("Chapters") have been developed without any common guidelines from the WHO. On some occasions the mtag has considered leaving the ICD-11 project. The opinion of the mortality meeting was that there might still be a possibility to influence the outcome, so members of TAGs and other groups should continue submitting comments and suggestions to WHO. The Nordic Centre cannot submit statements to the WHO, because formally it is the individual countries that are members of the WHO. But the Nordic countries should keep each other updated on their communications with the WHO as regards ICD-11. There is an RSG meeting on 4 June which might provide some new information. There will also be a discussion at the next meeting with the Board of the Nordic Centre. The Centre might arrange information meetings in each country on the status of ICD-11, starting in November, to forward information from the WHO-FIC meeting to the individual countries. To support our arguments we should collect background material from the Nordic countries, such as the number of ICD-10 codes now used in mortality and morbidity coding, including national code extensions. Lilja and Claudia (perhaps others as well?) volunteered to check ten pages each of the Alphabetical index, and Lars Age will assign tasks to the volunteers. [ , Lars Age's note: It might be a better idea to try and code a number of death certificates according to the ICD-11 index. Do we find the terms we actually see on the certificate; and if we find them, are they indexed to the right place?] 5

6 5. ICD: Recent updates to ICD-10, activities of the Mortality Reference Group [Please also refer to Lars Age's presentation] Lars Age reviewed some of the updates decided at the October 2013 meeting with the Update and Revision Committee. For complete information on the updates, please see Lars Age also gave a summary of the work performed buy the Mortality Reference Group since last year's meeting with the Nordic group. 6. Scientific presentation [Please also refer to Gleb's presentation] Gleb presented studies on the poisoning mortality in Estonia. It is high in Estonia, and forensic examination is not always carried out. The situation in other countries is difficult to asses, and as a result the comparison published by EMCDDA (European Monitoring Centre for Drug Dependence and Addiction) may not be valid. If a drug death has been investigated forensically, the death is registered by the forensic institute. According to the data, only 27% of drug poisoning deaths are due to a single drug, and 66% of all deaths involve fentanyl. It is not clear why fentanyl is used more in Estonia than elsewhere. The EMCDDA selection B works very well in identifying drug-related deaths, and it misses only 3.6% of them. However, the substance codes in ICD-10 are too unspecific. For example, there is no specific code for many dangerous substances, such as fentanyl. Similarly, there is no specific code for surrogate alcohol. Forensic death certificates not specifying the substance and certificates stating aspiration as underlying cause of death are queried. This improves the data considerably, and it is a more sustainable system than a special register kept at the forensic office. Discussion: Till next year, a small group (Gleb, Anne Gro (?), Claudia, Lars Age) will think about how reporting of data on drug-related deaths can be improved. Especially, more detail is needed, and subdivisions of existing ICD codes might be an option. Also, it would be important to separate dangerous drugs from less dangerous ones, and drugs with abuse potential from non-abuse drugs. 7. Producing and using statistics on multiple causes [Please also refer to Lilja's presentation] Lilja reported on a review of scientific papers discussing and using multiple cause data. The underlying cause, which so far has been the main focus of mortality coding, is intended as a tool to discover untimely deaths and thus prolong life. Multiple cause data are valuable because they give more information on how people lived for the last part of their lives, for example on co-morbidity, health needs and quality of care. One paper used the ratio MC/UC (SRMU) to give an indication of how much a specific cause would be underestimated if a data user would look to the underlying cause data alone. Further, clusters of diseases and patterns of association give important information on complications, 6

7 and could be used for assessment of how specific complications affect the prognosis of other conditions. Therefore, they would be valuable for special studies on mortality in the elderly. [Please also refer to Solvejg's presentation] Solvejg reviewed reporting of alcohol as a cause of death and assessments of alcohol-related mortality. There are alcohol-related causes in many ICD chapters, and to present a complete picture it is important to combine conditions from several ICD chapters. In the study material here were 2774 deaths with a mention of alcohol, but an alcohol-related cause was selected as underlying cause in only 1483 cases. This indicates an underreporting. Would we get closer to the truth if we were to make more use of data from the patient register? Katarina presented some trends for avoidable complications reported as multiple causes; sepsis, malnutrition and pulmonary edema. There is an increase in deaths mentioning malnutrition since 2011, and the infections seem to be increasing as well. The result might be due to a selection of patients in the material. Sweden will continue the analysis, and will consider both duration (how long was the patient hospitalized) and which the underlying cause was. Underlying cause might not be as useful in the elderly as in people dying prematurely, but it would not be advisable to try and replace the UC with something else. However, we could collect as complete data on multiple causes as possible on a sample of deaths. Tuesday 3 June (9:30-16:00) 8. Computerized coding and classification 8.1 Electronic certification: Ongoing projects, plans for the future Sweden: There are problems with electronic certificate (EC). The technical solution is fine (it includes notification and certification of cause of death), but there are legal problems. A change of existing legislation is required, which will take time. The link between the EC and the electronic patient record has not been evaluated yet. Sweden might not be able to enforce the use of EC, and paper certificates would still be an option. However, a web-based EC is in use already. Denmark: The EC has been in use since 2007, but more certificates are missing now than before (4%). There will be a special project to increase the coverage. The SSI (Statens Serum Institute) now has a web page that lists how many certificates that are missing for each hospital, and reporting has increased since this web page was opened. Information from page 1 now goes directly to the Church for burial permit, which will make administration around the burial easier. It is important to prevent mistakes that would notify living individuals as deceased. SSI will arrange conferences with certifiers and stress the importance of death certification. Comments: It is important to understand how the complete administrative system around death and burial is, then start with the most central part. Experience from France and US indicates that the EC must facilitate things for the certifier, otherwise the system will not be much used. 7

8 Norway: The EC project was suspended for some time, but now it is restarted with a new project leader. The team plans to visit Sweden and Denmark, and perhaps the EC system will be implemented in Finland: There is no EC yet, but the Institute for Forensic Medicine will introduce a system this autumn. Most of the system has been completed, but some technical issues remain. There is funding for completing the project in Estonia: There have been plans since 2005 but no further funding. Some testing is done and the system is designed and described; but currently there are no plans for implementation. Iceland: The EC will be a part of the general health care IT system. There is an electronic database for prescriptions, so all doctors have electronic ID cards. This ID could be used for death certificates as well. A problem is how to identify foreigners in the system, and a paper channel might be needed as well. Some kind of EC system might start next year, based on the new international certificate. Implementation will be easy because there is just one big hospital. It might help that people want to get rid of their typewriters! The meeting discussed various ways of identifying non-residents in an electronic system. Denmark uses date of birth, the first three characters of the name plus one figure for the sex. Eurostat has no recommendations on the format for the ID. Using passport number might be problematic, because passport numbers may change. Denmark does not submit place of death as a separate variable to Eurostat. Latvia: Within the e-health project the electronic certification is intended, planned, but still, in the unknown future, because progress is very weak in implementing the IRIS, therefore our ACME operates with defects (IT services providing use are purchased from external companies). Eurostat issued Grants proposal for e-certification of causes of death our management, unfortunately, would not (could not) use. 8.2 Computerized coding and classification [Please also refer to Lars Age's presentation] Lars Age presented the current status of Iris, see separate presentation. On table updates, Lars Age explained that ACME tables (MMDS/Tables) affect the selection of UC, and because of that also the statistical trends. The Iris tables (from the Access Table database distributed with Iris) do not affect the time trends, or at least not significantly. Therefore, users can update the Iris.exe and the Iris tables to get access to the most recent functions but keep the MMDS tables. It will not disturb the time trends but still give coders access to use the most recent version of the Iris software. Countries using Iris are asked to help in the testing and evaluation of a new version. Some testing is always done at the Iris Institute before release, but this testing will not have 100% coverage of all potential errors. However, there should be no major problems at release time. If problems are found, send a report to the Iris institute. Denmark will implement Iris in late 2014 or early Finland has resumed testing. 8

9 9. Coding comparison: Results of coding comparisons since the 2013 meeting, and discussion of selected cases EE-01 >> Take to MRG: Could we use the same linkages for all types of hypertension? The difference between I10 and I11 might be one of complete reporting only. FI-02 >> Develop list of secondary conditions for perinatals, to be used when applying Rule 3 to perinatal certificates. IC-02 >> Suggestion for MRG: Give priority for I60-I64 over I69, it is more important to focus on current episode (may indicate efficiency of stroke treatment). 10. Further issues of coding and classification - ACME agreement as measure of coding comparability how to deal with cases where ACME obviously is wrong? - How to retain coding expertise with increasing automation? ACME agreement may not be sufficient as an outcome measure from the Nordic coding comparisons. Sometimes ACME is wrong and disagreement does not automatically mean that the coding is bad. On the other hand, ACME agreement is objective and can be calculated immediately when a coding lot is completed. But we might want to supplement it with another measure the takes agreement between countries and what the groups considers to be the correct UC into account. Lilja and Lars Age will bring a suggestion to the next meeting. It is important that the rating according to the new measure is not influenced by the number of participants. The result of previous coding comparisons should be recalculated according to the new measure. The group also discussed how to retain coding competence in an automated coding context. Experiences show that although automated systems may perform very well and give mortality coding a stable basis, there is a fair number of complex certificates that must be coded manually. Therefore, it is important that managers and supervisors realize that automated coding cannot replace expert coders. Further, expert coders are also needed for ongoing evaluation of the automated coding systems, and for explaining coding rules to researchers and other data users. 11. Next regional seminar: Date, place and subject? Place: Helsinki Date: May-June 2015 Subjects: How to report drug-related deaths, new measure for coding agreement, ICD-11 (testing of the Alphabetical Index) ************************* 9

10 Lars will place new material from this meeting on the Centre's website, Username: mort Password: reyk 10