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Overview of the integration and functioning of the Health Information System and the Civil Registration and Vital Statistics System,

Republic of Macedonia

Report of main findings

External consultation1for WHO Regional Office for Europe and

WHO Country Office in Skopje, Republic of Macedonia

3-7 December 2012 Skopje

1 Dr Fern Greenwell, International consultant, in collaboration with Professor Dr Elena Kjosevska, National Institute of Public Health

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Overview of the integration and functioning of the Health Information System and the Civil Registration and Vital Statistics System,

Republic of Macedonia

Report of main findings

A well-functioning health information system (HIS) is the basis for effective, evidence-based policy-making and planning in the health sector. An important component of the HIS is access and use of high quality birth and death statistics generated by a continuous, universal, compulsory and permanent civil registration system (CRS) (WHO 2010). The World Health Organization (WHO) Regional Office for Europe and the WHO Country Office in Skopje have commissioned a review of the current functioning of national health information and civil registration systems in order to better understand the extent to which they are harmonized to produce quality, health-related data, with a focus on mortality data.

The purpose of the mission to Skopje was to assess the quality and flow of health and demographic statistics in the Republic of Macedonia (hereafter, Macedonia), especially as regards the integration and use of birth, death, and cause of death information. The mission corresponds with one of the priorities in the WHO Biennial Collaborative Agreement between the Ministry of Health and the WHO Regional Office for Europe 2012/2013, ‘Health systems strengthening and public health’, and in particular, the ‘further development of an integrated health information platform with databases and analytical reports’2.

The approach for carrying out the review was to become familiar with relevant national documents

and laws, and to hold unstructured interviews with persons in key national and international institutions including the Ministry of Health, Ministry of Justice, State Statistical Office, Institute of Public Health, Centres for Public Health, Agency for Protection of Personal Data, UNFPA and UNICEF (see Annex 1 Mission agenda). Discussions with informants focused on the data collection mechanisms, quality control, and exchange of data, as well as their use in measuring health system performance. In addition, a WHO rapid assessment tool was completed to provide a standardized summary of the functioning of the national civil registration and vital statistics system.

The WHO Country Office coordinated logistical and translation support during the mission, and all

activities were conducted in Skopje, from 3-7 December 2012. This report reflects the main issues discussed with national specialists during the mission and proposes recommendations formulated together with WHO and national partners.

Background

The Republic of Macedonia became independent from the former Yugoslavia in 1991. It is located in the Balkan peninsula of Southeast Europe, and is the southern-most country among the former Yugoslavia countries. It is bordered by Albania to the west, Bulgaria to the east, and Greece to the south. Table 1 shows other countries in the neighborhood, and their comparative population sizes.

2Biennial collaborative agreement (BCA) 2012–2013, http://www.euro.who.int/en/where-we-work/memberstates/the-former-yugoslav-republic-of-macedonia/areas-of-work

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Table 1.Republic of Macedonia and surrounding countries

Country (capital) Date of independence Population in 2010 (in millions)

Slovenia (Ljubljana) 1991 2.0 Croatia (Zagreb) 1991 4.4 Bosnia Herzegovina (Sarajevo) 1992 3.8 Montenegro (Podgorica) 2006 0.6 Serbia (Belgrade) 2006 7.3 Kosovo (Pristina) 2008 from Serbia 1.7 Macedonia (Skopje) 1991 2.1

Source: WHO Regional Office for Europe, European health for all database (HFA-DB) In 2010 Macedonia had a population of about 2.1 million with about equal shares under 15 years

(18%) and over 60 years (17%); the median age was 36 years. The natural increase of the population is slightly positive since the crude birth rate just exceeds the crude death rate (10.8 in 2010 and 10.1 in 2009, respectively) (WHO 2012). Although these parameters describe a slightly younger population than the average European population, population ageing and low fertility rates are nevertheless emerging demographic issues for the government3,4. Fifty-nine percent of the people live in urban areas.

Since 2008 the World Bank classifies Macedonia among the upper-middle income group of

countries. Comparing Macedonia’s Millennium Development Goal (MDG) indicators in 2010 with those for the European Region’s average for the same year, and with the average for other upper-middle income countries, the country as a whole does as well or better on most MDG indicators. Performance on other demographic and health workforce indicators lags behind the European average but is more favorable compared to the average for upper-middle income countries (Table 2).

Table 2. Selected indicators for Macedonia FYR, the World Health Organization European Region (average), and the World Bank Upper-middle-income group of countries (average), 2010

Macedonia FYR WHO European Region (average)

WB Upper-middle income countriesa

(average) Millennium Development Goals

MDG 1 Percentage of children under five underweight (2005-2011)

1.8 0.5 na

MDG 4 Infant mortality (per 1000 live births) 2010

7.6d 12 16

MDG 4 Under-five mortality (per 1 000 live births) 2010

8.3d 13 19

MDG 4 Measles vaccination coverage among 1-years olds (%) 2010

97 94 96

MDG 5 MMR (per 100 000 live births) 2010

10b [3-31]

20 [18-24]

14 [12-16]

MDG 5 Antenatal care coverage (at least one visit, 2005-2011)

94 97 80

3http://en.worldstat.info/Europe/Macedonia 4 Country Factsheet, http://eeca.unfpa.org/webdav/site/eeca/shared/documents/Macedonia%20factsheet.pdf; Addressing Low Fertility in a World of 7 Billion: Macedonians Try Financial Incentives (13 October 2011) http://www.unfpa.org/public/home/news/pid/8591

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Macedonia FYR WHO European Region (average)

WB Upper-middle income countriesa

(average) MDG 5 Births attended by skilled personnel (%, 2005-2011)

100 98 96

MDG 6 Prevalence of tuberculosis (per 100 000 population) 2010

24 63 108

MDG 6 TB case detection rate (%) 89 78 81 MDG 6 TB treatment success rate (% in 2009)

90 63 86

MDG 7 Population using improved drinking water source (% in 2010)

100 98 93

Demographic and health workforce Life expectancy at birth (both sexes) 2009

74 75 68

Total fertility rate 2010 1.4 1.6 1.8 Physicians per 10 000 population (2010)

27c 33 17

Nurses per 10 000 population (2010)

42c 75 26

Hospital beds per 10 000 population (2005-2011)

45 62 39

Source: World Health Statistics 2012 (WHO 2012), unless otherwise noted.http://www.who.int/gho/publications/world_health_statistics/2012/en/ aUpper-middle-income economies ($4 036 to $12 475 in 2011) http://data.worldbank.org/about/country-classifications/country-and-lending-groups b WHO, UNICEF, UNFPA, and The World Bank estimates (2012). Trends in maternal mortality: 1990 to 2010. WHO: Geneva. www.who.int/reproductivehealth/publications/monitoring/9789241503631

c European health for all database (HFA-DB), World Health Organization Regional Office for Europe (July 2012) http://data.euro.who.int/hfadb/ dOfficial national estimates, Janeva 2012

Macedonia has defined its administrative areas according to the European Union classification of Nomenclature of Territorial Units for Statistics (NUTS). The NUTS-1 and NUTS-2 comprise the whole territory and NUTS-3 comprises eight statistical regions (Annex 2). There are furthermore 84 municipalities and 1776 settlements. In addition to the legal statistical regions, there are 30 health regions that do not correspond with NUTS.

Institutional and legal framework National institutions The institutions introduced below represent the main ones involved with the collection and/or dissemination of health-related statistics.

Ministry of Health (MOH) http://moh.gov.mk/eng/. The MOH was established in 1991 with the adoption of the Law on Health Care. The core functions of MOH are to formulate and implement policy, set priorities, and monitor health system performance (Gjorgjev et al. 2006). The Sector for EU Integration participates in negotiations for EU accession, monitors and evaluates implemented measures, and cooperates with international partners. The Sector for Modernization Management in Health and IT is actively building upon the ‘Strategy for the Development of Macedonian Integrated Health Information System’ (2006) to monitor quality of health care services, financial activity and

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patient satisfaction. This Sector also plans to undertake research and analysis, health care promotion, and monitoring and evaluation.

National Institute of Public Health (IPH) http://www.iph.mk/and regional Centers of Public Health

(CPH).The National Institute of Public Health is the national reference centre for health statistics that is responsible for surveillance, research and health promotion(MOH 2007, p30). It provides annual indicators to the WHO Health for All (HFA) database as well as other international indicator repositories e.g., Transmonee, Eurostat. The IPH Department of Social Medicine is responsible for routine public health information collected from public and private health facilities by its 10 regional Centers for Public Health (CPH). The CPH regularly submit to IPH monthly forms with aggregated data and quarterly individual case reports from out-patient clinics and hospital discharges. The IPH processes these data to monitor the utilization of health services, in-patient and out-patient, as well as to maintain various individual-level patient registries. IPH provides regular information to MOH and the public through disseminating annual publications- several of which are also translated into English- which help to inform policy decisions at national, regional and local levels. The publications include descriptive summaries of the health information collected. The IPH does not, however, provide statistical data to users via the website mainly because there is not a platform for dynamic data dissemination.

A separate visit during the mission was made to meet with the team at Skopje Center of Public

Health. This is the largest regional CPH covering a population of about 600 000 inhabitants, 300+ general practitioners, and 150+ health facilities representing about 10 different scopes of services. This CPH employs five physicians with high capacity to collect and analyze its regional data, but the number of staff is perceived as insufficient for the growing demands. The Skopje CPH employs one IT expert and maintains its own website. The Department of Epidemiology collects data daily on some preventable diseases but regrets that there are not more resources to focus on monitoring noncommunicable disease. Overall, the team expressed that although the relationship with IPH is good, the non-systematic work increases inefficiencies and expenses i.e. additional requests for completing ad hoc tables. The CPH actively anticipates a more efficient, integrated system for collecting quality data and transmitting it in a timely fashion to IPH.

Health Insurance Fund (HIF) http://www.fzo.org.mk/. The HIF was established in 1991 to manage

the health insurance system. In 2000, when the Law of Health Insurance was adopted, it became an independent body from MOH. The central office oversees 30 branch offices operating at municipal level. Health insurance coverage is almost universal across the population, and all public hospitals and ambulatory health providers have a contract with HIF (about 112 public institutions), as well as many private hospitals. The web-based reporting system functions in all hospitals and IT experts from the HIF and the MOH are working to update software in ambulatory clinics and to create an interface with MOH for an integrated health platform. In the long term, the system will include interfaces with SSO and CRO systems. The data collected by HIF on the insured population, according to the agreed benefits package, are analyzed for budget and planning as well as for annual reports and ad hoc reports, such as Diagnosis Related Groups, are published regularly and made available on the website. While the database provides a potentially rich source of information for service-based statistics, it cannot be assumed to be representative of all services since it does not capture all private services, including out-of-pocket and supplementary health insurance outside of HIF. HIF updates its roster of insured individuals by receiving information on deaths from the Ministry of Labor, Ministry of Interior, and the Pension Fund. Electronic health cards are being developed and the first approximately 2000 have been distributed.

Ministry of Justice – Civil Registration Office (CRO). In accordance with the Law on Civil registration,

the basic reporting units are local registrar offices responsible for registrar books of births and deaths.

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There 26 regional civil registration offices and 139 local registrars. The central DCR does not process or disseminate vital statistics, rather it provides the logistical mechanisms to collect the statistics and transmit them to the State Statistical Office.

State Statistical Office (SSO) http://www.stat.gov.mk/Default_en.aspx. The SSO has eight regional

statistical offices. The strategic objectives and the basic values of the SSO are defined in the Strategic Plan 2012-2014 (SSO 2008), in line with the 2007 Law on State Statistics (Official Gazette of the Republic of Macedonia, No. 54/97 and 21/07). The SSO carries out important functions related to health statistics:

1. Plan and conduct national surveys. The Five-Year Statistical Programme defines the type,

number and scope of statistical surveys which are conducted in Macedonia(SSO 2008).[Here, we wish to point out that in order to obtain statistically-representative estimates from a population-based survey, a full listing of census enumeration areas and households is usually the preferred sample frame. Currently, however, an updated sample frame available for population-based surveys does not exist because there has not been housing and population census completed since 2002.As an alternative, the 2011 MICS used electoral voting units for a sampling frame instead of a traditional listing of census enumeration areas.

2. Maintain vital statistics and cause of death database. From the vital events information that SSO obtains from local registrar offices, it processes and disseminates timely, annual vital registration information on its website. The on-line statistical database is user-friendly and permits detailed data to be downloaded in PC-Axis file format, with aggregation at the municipality level.

3. Liaise with international community. The SSO provides the international community with ICD-10 cause of death statistics, the number of live births, and population estimates. Currently this information is provided separately to Eurostat and WHO, but in future it is planned to send to just one entity and sharing will be harmonized between international partners i.e., WHO, Eurostat, OECD.

4. Update population estimates. Population counts are used as denominators in many health statistics, and therefore up-to-date population estimates are needed to produce accurate indicators. Currently, population estimates at municipality level are generated from information on births, deaths, and migration from the Ministry of Interior. However, a new population census is needed to validate these estimates.

5. Maintain a population registry. A working group has been formed to advance the establishment of a population registry. The 2004 UN Global Assessment of Statistics recommended transferring the administrative population register to the Ministry of Internal Affairs and developing the statistical population register at the SSO (Novkovska 2009). An updated population register could eventually replace a census conducted by traditional direct enumeration. For example, population registers are being used in 20 of 27 EU countries in 2010, with five countries taking their census solely on information in population registers (Austria, Denmark, Finland, Norway and Sweden), while the others use population registers to complement data in registers with further information from enumeration or from surveys (Valente 2010). Such a register has potential to be linked with numerous other health and social registries by the unique ID5.

In terms of health statistics, the SSO obtains about ten tables of selected routine health statistics

from the IPH but does not disseminate them on their website. Wider use of health statistics would be

5 See for example, Finnish health and social welfare registers in epidemiological research (Gissler and Haukka 2004)

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facilitated if the SSO disseminated selected statistics on their website, downloadable in PC-Axis tables, at least until the IPH obtains a data dissemination platform. The 2010 Light Peer Review also recommends that statistics from other major producers of statistics be published on the SSO website (Slegrova and Kopsch 2010).

Recommendation 1. Seek an expedient resolution to obtaining and disseminating up-to-date population estimates in order to: 1) provide an up-to-date sample frame used for designing household surveys, and 2) provide accurate denominators for many health-related indicators, including mortality and morbidity.

Agency for data protection. The Agency responds directly to Parliament and is responsible for setting personal data standards and reviewing compliance with these standards for all institutions involved with the collection or transmission of data. The first data protection law was adopted in 1994, and the amended law, Law on Personal Data Protection passed on January 25, 2005 is in harmony with high technical standards of EU legislation6. In the past year, Agency inspectors have held consultations and given detailed guidelines to HIF and SSO on meeting standards. The MOH, IPH and Civil Registration Office (CRO)also have data protection officers assigned and are subject to inspection at all levels.

In terms of public health information, although the relevant indicators are generally aggregated

statistics, they are frequently computed using individual-level data. There are, therefore, two areas in particular that need to be addressed to ensure public health information complies with the personal data protection standards. One, the disease registries currently kept by IPH, as well as the new registries introduced in the 2009 Law on Recordkeeping in the Field of Healthcare, do not meet personal data protection standards. The 2009 Law, for example, needs to be amended through its by-laws to state precisely which variables will be collected for each disease, the period the data will be kept, and the purpose for collecting the data. Two, there has been a bottleneck since 2007 in SSO’s sharing of personal level cause of death data, with the unique personal identification number, with MOH/IPH. It is necessary to exchange data at this level of detail in order for IPH to update disease registries by deleting deceased cases. In this scenario, it is the SSO as data controller that must stipulate in its law that it will share personal data with MOH (Article 10), and technical security measures must be upheld by both parties to guard confidentiality. The Data Protection Agency does not prohibit data exchange if the standards are maintained.

SSO laws regarding maintaining a population registry are also being developed in consultation with

the Agency. Currently, the registry is being developed for statistical purposes. However, the registry may be defined by law to serve other purposes, like in other EU countries where information may also be used for conducting the census and linking with other social or health registries. Given the possible expansion of the registry’s use, there are efforts underway to replace the 13-digit unique personal identification code with a randomly generated unique ID number.

Finally, the Agency reviews software standards to ensure that they are unified and comply with ISO

27001 standards, including interoperability and confidentiality. In this regard, the Agency is an important mediator that helps to ensure that the various software platforms being implemented by national stakeholders will be harmonized. Legal framework

6Law on Personal Data Protection which the Parliament of the Republic of Macedonia passed on January 25, 2005, http://www.dataprotection.eu/pmwiki/pmwiki.php?n=Main.MK#dq

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Several major developments in the past decade relate to better organizing the collection and use of statistics, including population and health statistics. Each of these represents advancements in a given area, as well as on-going challenges to harmonize further legal and technical activities.

EU integration. In 2001, as a first step in joining the European Union (EU), Macedonia signed a

Stabilization and Association Agreement (SAA) which included provisions for future EU membership7. In particular, Article 82 stipulates ‘Statistical cooperation in the areas of timely, reliable, objective and accurate data; development and maintenance of national capacity for collecting, processing and disseminating statistical information of high quality using modern technologies in the most efficient way; assurance of the confidentiality of individual data; and provision of information on methods and exchange of statistical data (Eurostat)’.

In 2005 the European Council officially recognized Macedonia as an EU candidate state.

Subsequently, Accession Partnership instruments outline medium-term objectives to fulfill 35 Community acquis, of particular relevance, harmonization and coordination of statistics (acquis Chapter 18 Statistics8); and alignment with EU policies in the field of public health (acquis Chapter 28 Consumer and health protection9) (European Commission 2008). Since 2007, Macedonia has received IPA (Instrument for Pre-accession Assistance) financial assistance to support the stabilization and association process, including for improving statistics10.On an annual basis, the country reports on progress, and the European Commission reviews progress, towards EU integration in light of accession obligations. The latest review was in 2012 and found preparations in the area of statistics to be ‘moderately advanced’; and, in the area of public health, ‘some progress’ has been achieved, however, little progress has been made on addressing health inequalities (European Commission 2012). Coordinating activities with other EU accession countries is on-going, for example, the European Centre for Disease Prevention and Control (ECDC) held a coordination meeting in November 2012 to discuss collaborative activities in the area of communicable diseases11.

Despite the European Commission recommendations since 2008 for launching EU membership

negotiations, there continue to be obstacles in 2012. These obstacles are not related to statistics or health protection.

National Health Strategy. In 2007 the Ministry of Health adopted the Strategy of the Republic of

Macedonia 2020 for Safe, Efficient and Just Health Care System. There are several notable sections of 7Stabilization and Association Agreements (SAA) 2001, http://ec.europa.eu/enlargement/pdf/the_former_yugoslav_republic_of_macedonia/saa03_01_en.pdf 8Chapter 18. Statistics — Further develop all areas of statistics, achieve full harmonization in key areas in terms of frequency, scope, classifications, timeliness and quality and put in place a uniform management and production system. — Put in place a well-coordinated national statistical system. 9 Chapter 28: Consumer and health protection — Complete alignment with the EU acquis in the field of consumer protection and strengthen the administrative capacity needed for effective market surveillance. — Continue alignment with the EU acquis in the field of public health policy, more specifically in the fields of tobacco, blood, tissues and cells and communicable diseases. Strengthen the institutional, administrative and financial capacity in the field of public health. — In the area of mental health, develop community-based services as an alternative to institutionalization, and ensure allocation of sufficient financial resources for mental health care 10IPA financial assistance, http://ec.europa.eu/enlargement/instruments/funding-by-country/fyrom/index_en.htm 11 ECDC Coordination meeting of National correspondents in EU enlargement countries: Reflections and developments. Stockholm, Sweden 26-27 November 2012.

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this document related to the MOH vision of the collection and use of health information. Section 9.2, on the Health Information System, recognizes that Macedonia lags behind other European countries in terms of applying modern technology to gather and use information. It further recognizes the Institute of Public Health and its 10 regional Centers of Public Health as the reference institution for health statistics and the official partner of national and international agencies e.g., WHO. The Institute is in need of appropriate IT staff, and necessary hardware and software for an integrated, web-based information system (MOH 2007, p.30).

Section 18 of the Strategy, on the Priorities with Regard to the Improvement of the Health

Information System, builds upon the 2006 Strategy on the Development of an Integrated Health Information System. Short-term priorities include completion of the Health Insurance Fund reporting system, implementation of the Hospital Information Systems; and development of unified register coding system. The mid-term priorities (2008-2012) envision introducing electronic reporting for primary health care providers for routine reporting to HIF and IPH. The long-term priority is to introduce the Diagnosis Related Groups and electronic health cards (MOH 2007, p.47). While both of these sections related to health information are useful for communicating and rallying support for strengthening HIS, there appears to be a stronger focus on patient management while relatively little attention to planning with IPH to ensure that the efficiency in obtaining public health information will be improved.

In terms of using health information, the Annex A of the “Health for all in the 21st Century” sets out

21 broad goals to improve the health status of the population (MOH 2007, pp.50-51). Although the goals are called targets, they are not operational targets in that are not defined such that they can be accurately monitored. The Annex C, an Overview of the Health Strategy Plan, proposes a logical framework matrix with activities and indicators that are likely to be more clearly elaborated in specific disease strategies or working documents. The national strategy document does not attempt to monitor health system performance (see Area 5, below).

2009 Law on Recordkeeping in the Field of Healthcare. This law applies to health statistics

authorities including the Institute of Public Health, regional Centers of Public Health, and all health facilities and health professionals. It aims to regulate individual and aggregate health records; data collection, processing, dissemination, and archiving; data quality assurance; and personal data protection. Of particular importance in the law is the addition of new disease registers. Currently the IPH is responsible for maintaining ten registers, but the new law lists a total of 35. There are several legal and technical issues to address before the law will be successfully implemented. These will be addressed later in the report.

2010 Law on Public Health. This law regulates implementation of essential public health functions

and tasks, the system of public health, public health emergencies, and the funding of public health activities.

Health Systems in Transition (HiT).The HiT publication is a standard review of health systems,

providing a detailed profile of the national health system, reforms, and policy initiatives. The Macedonia HiT was first published in 2000 and updated in 2006 (Gjorgjev et al. 2006). A new version of Macedonia HiTis presently in draft and will reflect the status in 2012.

Main issues in HIS and CRVS

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The main issues identified in the health information and civil registration/vital statistics systems are described in this section. The issues are organized into five areas: Integrated data warehouse; Disease registries; Vital statistics; Maternal and early infant mortality; and Health system performance. Related recommendations are associated with each section. Area 1.Integrated data warehouse 1.1 Flow of routine health statistics The Institute of Public Health (IPH) is the national reference centre for health statistics, but the collection and flow of routine health information from the 10 Centers of Public Health (CPH) is outdated and inefficient. Staff at IPH spends large amounts of time to re-enter routine data that is sent by the CPH on a monthly, quarterly or semi-annual basis depending on the type of report. Some CPH send information on paper forms—on aggregate reporting forms or individual patient history forms—and data are entered at IPH into an Access database that was developed in 1995. Some CPH also use Access databases at the regional level, while others such as the Skopje Center for Public Health have contracted local IT services to develop specific software for managing their data. The format in which data are extracted and sent to IPH, however, requires them to be re-entered at IPH, and in some cases the format in which data are sent from CPH is not even readable by IPH. Currently IPH is developing an XML format in order to synchronize data extraction from various hospital morbidity software applications.

These uncoordinated solutions to obtain data from CPH are exacerbated by new or ad hoc requests

for data. For example, in 2012a set of new tables to be submitted to Eurostat were requested from the CPH12 for hospital morbidity. If there were an on-line integrated data warehouse, with scalability to automatically update revised reporting forms from central level, then these data would be readily available. Rather, the IPH must send the empty tables separately to each CPH to complete, consequently adding a reporting burden and extra costs to process the data. In similar fashion, reporting information on diseases to the European Surveillance System (TESSy) is likely to pose an extra, unnecessary burden on staff if there is not a more flexible system to aggregate and format data.

The results of these data flow inefficiencies are1) suboptimal use of staff time to enter data instead of more frequent and more in-depth analysis of information; 2) risk of multiplying human error from having to manually enter data more than once. See Box 1 for a standard approach to strengthening the health information system by implementing an integrated data warehouse.

Box 1. HMN Roadmap for Health Information Systems (HIS) Strengthening According to the Health Metrics Network (HMN) roadmap there are three main steps for strengthening national HIS (WHO/HMN 2008, p51) (Annex 3). The first step is to conduct an assessment of the national health information system. Guidance on conducting such an assessment and determining priorities are provided on the HMN website13.

The second step is for relevant national stakeholders, i.e., the MOH and IPH, to draft a Health Information System (HIS) strategy document that is adopted by the MOH, with input for key sections

12 The international community also has a role to play to minimize burden on countries to report. The WHO, OECD and Eurostat are striving to harmonize their indicators. 13Access the HMN documents and standard tools for HIS strengthening, http://www.who.int/healthmetrics/tools/en/index.html

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from other key institutions such as HIF, SSO and CRO. The strategy should prioritize short-term, medium-term and long-term objectives of the HIS system. For example, a short-term objective would be to have all 10 CPH successfully reporting aggregate data on-line to IPH; medium-term objective to have all CPH reporting individual-level data on-line to IPH for its maintenance of required registries; and long-term objective to extend on-line reporting to hospitals and eventually primary health care units.

In terms of interoperability with other software or data repositories at central or regional levels, there needs to be working groups to draft MOUs on what data will be shared, and what standards should be implemented for this to be possible.

The HIS strategy would include a phased implementation plan, for example, electronic reporting first from all CPH to IPH, and eventually rolling out on-line reporting to hospitals and primary health care centers to the extent that they have necessary hardware and IT support. There should be no interruption in reporting of data—those facilities not yet reporting on-line would continue to report on paper to the CPH, which would be entered on-line there and electronically transmitted to IPH. The HIS strategy would include an estimated budget to cover costs of necessary hardware and for human resources to provide IT support, installation and training, and supervision.

The third step is the nation-wide implementation of an integrated software platform in line with international standards. The software would be managed at central level and any updates would automatically be made for all sites with on-line reporting. The software should allow for the following14: - flexibility in defining data entry - scalable, meaning there is automatic updating of revised reporting forms and indicator

definitions - interoperability with other softwares for health data exchange; - transmission of aggregate, individual or patient-level information; - levels of access defined for different users - analysis and use of information at all levels e.g., tailored tables, figures, maps

Prior to actual implementation it is often useful for Working Groups to define a core set of indicators, the metadata associated with those indicators, and streamline forms that can be programmed to produce a minimal database.

An earlier attempt to modernize the HIS was set forth in the Strategy for the Development of

Macedonian Integrated Health Information System (MOH 2006). In hindsight, this was an ambitious project that aimed to complete by 2010 the Health Insurance Fund IT system, hospital information systems, unified registries, electronic reporting by PHC providers and implementation of electronic health cards. The project was initiated and partially implemented with the support of Croatian IT consultants (including purchase of a server now housed in the MOH basement). Although that project has stalled, the Minister of Health has created a Sector for Modernization Management in Health and IT to develop a patient-level information system using, in their own words, a ‘business intelligence system’. Work is in progress although a new activity timeline and implementation plan was not available during the mission.

14 A free and open-source software meeting all of these requirements, for example, is the District Health Information Software (DHIS2), http://dhis2.org/

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A simpler health information project that targets communicable disease is the early warning system for communicable disease surveillance (EWARN), or ALERT, in Macedonian. This is a Norwegian-supported WHO project that the Minister of Health has approved. It includes the IPH and regional CPH as recipients of communicable disease data within a one week time period, and primary health care institutions as reporting units (WHO and MOH c.2008). The EWARN/ALERT website provides weekly reports by disease from 2008 through 201115.

Figure 1 is a schema of routine data flow from reporting units (health facilities and hospitals), to the

10 Centers of Public Health, and to the Institute of Public Health

Figure 1.Schema of the flow of routine health statistics in Macedonia, to be transitioned from paper reporting to on-line reporting

1.2 Interoperability of software

Data exchange mechanisms between institutions risk not being interoperable if there is not advance planning between institutions during design and implementation of a software platform. National institutions involved with collecting or processing health-related data are developing electronic reporting systems independently for their respective needs: MOH is developing a highly involved patient referral system; Health Insurance Fund (HIF) has an already functioning web-based system that is used with its contracted facilities; Ministry of Justice Civil Registration Office is planning to roll-out a reporting system from 2013-2015 for reporting vital events. The State Statistical Office processes large amounts of data including detailed vital registration data and population estimates. It is not evident that these agencies are sufficiently coordinating their efforts to ensure that their systems will be interoperable for eventual exchange of information.

15 EWARN/ALERT website, http://alert.mk/

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Figure 2 is a schema of potential data exchange between central level institutions, including MOH-

related agencies and other national bodies with health-related information. Note that all of the arrows are going in both directions, indicating that data or other information can flow in both directions. An important role of the regional CPH will be to verify the data that is entered by health facilities located in its region as well as continue using it for regional planning and management.

Figure 2.Schema of a web-based integrated data warehouse with potential data exchanges between national institutions

1.3 Data dissemination and data use The IPH collects a wealth of information on health service availability and utilization. There is a respectable history of annual reports published by the IPH Department for Health Statistics and Informatics including the annual Health Maps, the annual Mortality Report, and periodic reports on specific diseases, e.g. Noncommunicable Diseases 2001-2010. However, while the consistency and presentation of these publications is very good, and appreciated by the MOH and other users, there are important limitations that hinder more in-depth analysis. First, the raw data are published annually in static tables in the reports available on-line, but the raw data are not readily accessible on-line, for shorter time periods, for dynamic use by others inside or outside of MOH.

Second, the reports provide mainly descriptive information which is limited for purposes of

monitoring targets, trends and health inequalities. Deeper analyses, such as standardizing rates to compare over time and across regions, or quantifying disease burden in terms of years of life lost due to premature deaths, and calculating potential gains in life expectancy by reducing deaths from certain diseases, are examples of ways that information could better inform policy-making.

Recommendation 2. Plan and implement an on-line integrated data warehouse in line with international standards, including:

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A. Interoperability with other software platforms being developed by institutions collecting or processing health-related information;

B. User-friendly, dynamic access to data on the website for outside users in order to promote wider use of data and creative approaches to more informative analysis.

Area 2.Disease registries The WHO definition of ‘patient registry’ is ‘a file of documents containing uniform information about individual persons, collected in a systematic and comprehensive way, in order to serve a pre-determined scientific, clinical or policy purpose16’.

The Institute of Public Health (IPH) is currently mandated to maintain ten registries with information from ambulatory clinics and hospital discharges. These registries are important sources of information for generating incidence and prevalence as well as potential further analyses. Once the 2009 Law on Recordkeeping in the Field of Healthcare is fully implemented then IPH will be responsible for maintaining a total of 35 registries (Official Gazette of the Republic of Macedonia, n.20 16.02.2009). Since the mid-1990s, the IPH maintains only two of the ten registries, for diabetes and cancer patients17. Information on patients is entered from paper-based new case forms into an Access database. IPH collects information for the other eight registries but does not process or analyze the data because they do not have a software application (the previous IT consultant developed the Access databases for cancer and diabetes but the contract ended before the software for other registries was developed).

There are two issues regarding the disease registries. The first issue is that the existing diabetes and

cancer registries are no longer able to be updated to exclude all patients who have died (MOH has only information on deaths that occurred in hospital), and therefore IPH is not able to generate prevalence statistics. This has been a dilemma since 2007 as a result of the strict interpretation of the State Statistical Office (SSO) of the 2005 Law on Personal Data Protection, whereby they ceased to share individual level data with personal identifiers on mortality with IPH. Other European countries, however, manage to share personal data without breaching confidentiality18,19. The Data Protection

16 Brooke EM. The current and future use of registers in health information systems. Geneva: World Health Organization; 1974. Publication No. 8. 17 “Some progress has been made in cancer screening. The government launched a yearly programme for early detection of malignant diseases; including regular cancer screenings. The cancer registry remains however only partly operational (EC 2012).” 18 “29. All the Nordic countries have an act on processing of personal data, which contains provisions on the processing of personal data. The act aims to ensure that the establishment and the use of computerized registers containing personal information are undertaken in such a way that the legal rights of the individual citizen with regard to the protection and integrity of his/her data are not violated. 30. According to this act, processing data for statistical purposes is allowed even if it was not the main aim of the data collection. Once data have been processed in a NSI, they must not be used for purposes other than statistics and research (the principle of "one-way traffic"). A statistical authority may grant access to confidential data for scientific research or statistical surveys. Data collected for statistical purposes are confidential irrespective of the source. The data collected from administrative sources are confidential in the possession of statistical authorities even if these data are public in the possession of administrative authorities. When handling personal data or business data, both direct and indirect identification shall normally be excluded (UNECE 2007 p.7).” 19Examples from other European countries that maintain registers may provide useful models for Macedonia’s situation. For example, the Norwegian Cardiovascular Disease Registry was created by their Parliament and regulation for the registry was established by the Government. Similar to Macedonia, the Norwegian Institute of Public Health is the designated data controller for the registry. The Norwegian data inspectorate, in the Personal Health Data Filing System Act, explicitly allows for use of personal data, “including personal identity number and

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Agency and the Government also have no objection for data to be exchanged for scientific or statistical purposes, but it appears that a law in SSO needs to be amended to specify the circumstances for sharing the data with personal ID. (See the above section on ‘National institutions’ for further details about the Data Protection Agency.) The Law on Personal Data Protection allows for sharing of personal level mortality data if relevant laws correctly provide for it:

“Personal data shall be collected for concrete, clear and legally determined purposes and processed pursuant to those purposes. Further data processing for historic, scientific or statistical research shall not be considered as not being in compliance with the primary purposes for which the data have been collected, provided that the appropriate protection measures have been undertaken in accordance with the law; (Article 5)”. The second related issue is regarding revisions to the 2009 Law on Recordkeeping in the Field of

Healthcare, specifically the 35 registries that IPH will be responsible for maintaining at central level. According to the opinion of the Agency for Data Protection, the IPH and MOH have been instructed to revise the 2009 Law to elaborate on precisely which variables will be collected for each disease registry and the length of time information will be maintained. This affects the diabetes and cancer registries currently being kept, but because information is considered of public interest the data collection will not be disrupted while the law is being revised [communication with representative in the Directorate for Personal Data Protection, December 7, 2012]. As for the 2009 Law that lists35 registers, part of the MOH efforts to develop its electronic reporting system is for its Sector for Modernization Management in Health and IT to program the remaining registers for IPH to maintain.IPH expects these to become available sometime in 2013.

Finally, it is worth considering which institution would be best positioned to maintain disease

registries. Registry databases are expensive to establish and maintain. They require the cooperation of many healthcare providers and require dedicated management. The IPH diabetes register alone, for example, receives approximately 26 000 new cases annually and each new case form consists of several pages of patient information. The cancer registry receives about 5000 new cases per year, also on multiple-page paper forms. These data are entered and analyzed by staff at IPH and annual reports are published on each disease. It is worth revisiting whether IPH will be prepared in terms of staff capacity—in numbers and in skill sets -- to maintain all registries, or would some specialized clinics such as for tuberculosis, cardiology, oncology and endocrinology be more appropriate data controllers? The Rare Disease Task Force has published a useful reference manual, Patient Registries in the Field of rare diseases: Overview of the issues surrounding the establishment, management, governance and financing of academic registries (2011)20.

other characteristics that directly identify a natural person”, in specific circumstances including Causes of Death Registry, Cancer Registry, […] . Sources: Notice on the Norwegian Institute of Public Health Website, http://www.fhi.no/eway/default.aspx?pid=238&trg=MainArea_5811&MainArea_5811=5903:0:15,5355:1:0:0:::0:0 Personal Health Data Filing System Act on the Norwegian Ministry of Health and Care Services, http://www.regjeringen.no/en/dep/hod/Subjects/the-department-of-public-health/Act-of-18-May-2001-No-24-on-Personal-Health-Data-Filing-Systems-and-the-Processing-of-Personal-Health-Data-Personal-Health-Data-Filing-System-Act-.html?id=224129 20Patient Registries in the Field of rare diseases: Overview of the issues surrounding the establishment, management, governance and financing of academic registries, http://ec.europa.eu/health/rare_diseases/docs/patient_registries_rev2011.pdf

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Recommendation 3. National institutions responsible for managing health-related data, including MOH, IPH, HIF, SSO, and MOJ/CRO agree on specific terms for exchanging data for scientific or statistical purposes, with personal identification information, in consultation with the Data Protection Agency, and expediently amend laws and security measures in compliance with the Law on Personal Data Protection. Area 3.Vital statistics As part of the review of the civil registration and vital statistics system, a standard rapid assessment tool was administered during the mission with input from specialists in the Institute of Public Health, Institute of Epidemiology, MOJ Civil registration office, and the State Statistics Office. The rapid assessment tool is an automated Excel workbook and is part of a more detailed guidance tool entitled, Improving the quality and use of birth, death and cause-of-death information: guidance for a standards-based review of country practices (WHO 2010).

The rapid assessment tool consists of 25 questions about how the civil registration and vital statistics systems function. The questions are grouped into 11 study areas:

• Legal framework for civil registration and vital statistics • Registration infrastructure and resources • Organization and functioning of the vital statistics system • Completeness of birth and death registration • Data storage and transmission • International statistical classification of diseases and related health problems (ICD)-compliant

practices and certification within and outside hospitals • Practices affecting the quality of cause-of-death data • ICD coding practices • Coder qualification and training, and quality of coding • Data quality and plausibility checks • Data access, dissemination and use

In summary, about half of the areas listed above identified no problems (see Annex 4 for summary

results by each study area). The other areas where improvements are needed are described in the relevant sections below. 3.1 Flow of birth and death information The collection of vital statistics is a joint undertaking between MOH, MOJ and SSO. The civil registration office (CRO), called the Office for Management of Registers of Births, Marriages and Deaths, is under the Ministry of Justice (previously under the Ministry of the Interior). The MOH medically certifies births and deaths, the CRO legally registers individual events and provides the logistics for transmitting information to the SSO, and the latter processes the data and maintains a database at central level. There are 26 regional CRO offices and 139 local registrar offices. The local offices are responsible for the legal registration of births, deaths, marriages, divorces and name changes.

Following delivery, the birth is medically certified by a physician and the hospital notifies the local registrar of birth. The parents or next of kin bring the medical certificate of birth to the registrar for the birth to be registered within a month, by law, and there is also allowance for late registration in the second month. The registrar assigns a 13-digit unique identification number, and issues a legal birth

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certificate. There is a small fee of about 50 MKD denars, less than one Euro, for the registration to be processed. This fee is considered affordable for the population in general, and those on social welfare are exempt from paying. It is noteworthy that, in the rare case that parents do not register a birth, the local registrar is notified by the hospital of the birth and a unique number is assigned.

Deaths are registered following a similar procedure. Following a death, the medical certificate of death is obtained by the family from the physician. The family brings the medical certificate to the local registrar to be processed. A legal death certificate is issued to the family and this is used to obtain a burial permit. Exceptionally, a death may be registered on the basis of statements by at least two witnesses, or by another qualified professional such as a coroner.

The local registrars record events in a very large-sized registry book and also fill a birth or death registration form on paper. The paper forms, with the medical certificate of death attached to the death registration form, are submitted monthly to the regional civil registration offices (26). The regional CRO then forwards these original paper forms to the regional statistics offices (8) who send them to the SSO every month. At SSO the cause of death is assigned an ICD-10 code before being entered into a database. The SSO, not the MOJ, maintains an electronic database at central level with the unique identification number and other personal information. Statistics on births and deaths aggregated at municipal level are published on the SSO website. Individual-level personal information is shared regularly with the Ministry of Labor, Pension and Disability Fund, Agricultural Subsidies and Development, the State Election Committee, the Ministry of Interior, and the Health Insurance Fund. It is not shared, however, with the Institute for Public Health under the Ministry of Health. As highlighted elsewhere in this report, this is a problem which the decision-makers need to finally resolve together.

Figure 3 shows the flow of vital statistics information from the health facilities (MOH), to local and regional registration offices (MOJ), and to the State Statistics Office. The blue boxes illustrate the health sector, the pink ones illustrate the MOJ/CRO sector, and the green illustrates the State Statistics Office and its branches. The red arrow represents the rupture in flow of individual mortality data to the MOH/IPH. Figure 3.Schema of the flow of vital statistics in Macedonia

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The MOJ started in June 2012 to design a web-based electronic register and reporting system to be installed in regional offices and eventually in 84 municipalities. Sufficient hardware in regional offices already exists; the local registrars will continue to report on paper until they are upgraded. Prior to launching the project tender, the central CRO approached several hospitals to review their readiness to implement the electronic system. The project is conceived to be rolled-out over a 3-year period from 2013-2015. In 2013 the registration software will be installed in several maternity hospitals in Skopje that are technology-ready. These hospitals will notify the CRO of each event by submitting basic information about the event via an on-line portal. The software for birth notification and registration was demonstrated during the mission (the software for deaths was not yet available for demonstration); it is thought to be user-friendly and easy to upgrade. The CRO has not yet coordinated with the MOH on future collaboration and data exchange. 3.2 Birth and death certificates The information collected from official birth and death medical certificates and/or registration forms were reviewed in light of the minimally-recommended information from the United Nations Economic and Social Affairs (UNESA) Statistical Division and the World Health Organization.

Most information recommended by the UNESA (2001) is included on the medical birth record form (Form IE-21); the missing information is noted in the observations column (Table 3). Table 3. UNESA-recommended items of information to collect on live births, and their availability on the medical birth record, Republic of Macedonia

Medical birth certificate (Form IE-21, Law of

Recordkeeping in the Field of Health, Off.

Gazette of RM,

Observations

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No.20/2009) Information about birth

Date of occurrence (of birth)

X

Date of registration X Place of occurrence (of birth)

NA There is information on the name and registration number of the health care institution only, in most cases place of birth can be indirectly derived. If birth is not in health care institution then place of occurrence is not known. Place of occurrence should be a separate field.

Place of registration NA There is no information explicitly on the form for place of registration. It is understood that the law is that births must be registered in place of residence, but when the system becomes electronic as planned in 2013-2015 then place of registration should be captured in a separate field.

Type of birth (i.e. single, twin, triplet, quadruplet, or higher multiple delivery)

X

Attendant at birth NA Type of attendant is only asked for a birth outside an institution. The types of attendant should be classified as (a) physician, (b) nurse, (c) nurse-midwife, (d) midwife, (e) other paramedical personnel, (f) lay person, or (g) not stated.

Sex X Birth weight X

Information about Mother Date of birth X Marital status X Educational attainment X Place of usual residence (see definition below)

X

Children born alive to mother during her entire lifetime

X

Children born to mother during her entire lifetime and still living

X

Foetal deaths to mother during her entire lifetime

X

Date of last previous live birth

NA Date of last live birth not included.

Date of marriage X Information about Father

Date of birth X Marital status NA Marital status of father not included. Educational attainment X

x =available, na= not available Source: UNESA 2001, pp 16-18, with an explicit definition of each item pp 27-42

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The main issue regarding the present birth recoding form is that it includes substantial additional information regarding a perinatal death. WHO recommends reporting deaths in the perinatal periods in a separate form (WHO 2010, Section 4.3.1-4.3.2)21. Currently, most of the WHO-recommended information for the perinatal form is collected on the birth record Form IE-21.However, a new perinatal form has been drafted in accordance with the 2009 Law on Recordkeeping in the Field of Healthcare. Prior to implementing the perinatal form, both the perinatal and the birth reporting forms need to be harmonized and streamlined so as not to duplicate or collect excessive information. The new perinatal form contains most but not all of the WHO-recommended data fields, but it also contains many items that are not recommended by WHO and that may be superfluous information to collect and process at central level. In particular, when revisiting the information on the new perinatal form, there should be consideration to including the missing items, in particular items 3 – 8 (about the mother) and items 12, 14 and 15 (Figure 4). Figure 4.WHO-recommended perinatal mortality reporting form

21 Perinatal period commences at 22 completed weeks of gestation and ends seven completed days after births (WHO 2010)

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Source: WHO 2010, Section 4.3.2

Information on a deceased individual is recorded in the medical certificate of death. This certificate is submitted to SSO regional office together with the form completed by the registrar, the ‘Statistical sheet for a deceased person’. Review of the form shows that all of the UNESA-recommended data items are available from these forms, assuming the residence of the mother can be ascertained from her ID number (Table 4). In addition, WHO recommends data fields to indicate a pregnancy-related death and a late maternal death. This information is not on the current form (see the section4.1 for detailed definition and examples). Table 4. UNESA-recommended items of information to collect on deaths, and their availability on the medical death record, Republic of Macedonia

Medical certificate of death Observations

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(Law of Recordkeeping in the Field of Health, Off. Gazette of RM, No.20/2009)

Information about death Date of occurrence (of death)

X

Date of registration X This information on separate ‘Statistical sheet for deceased person’ (i.e., death registration form filled by local registrar office). Information from both sheets are sent to central SSO.

Place of occurrence X Place of registration This information on separate ‘Statistical sheet for

deceased person’ (i.e., death registration form filled by local registrar office). Information from both sheets are sent to central SSO.

Cause of death (per WHO standard form)

X

Certifier22 X Personal characteristics

Date of birth X Sex X Marital status X Place of usual residence

X

Place of usual residence of the mother (for deaths under one year of age)

NA There is not an explicit field for the mother’s residence, but there is a field for mother’s ID.

x =available, na= not available Source: UNESA 2001, pp 19-20, with an explicit definition of each item pp 27-42

As outlined earlier, the CRO is designing an electronic reporting system for births and deaths to be

implemented in phases from 2013-2015. In future, hospitals having access to the portal will provide medical certification of events directly into the system, at which point the registrar will complete the legal registration process. Recommendation 4. Streamline the collection of birth and perinatal information by: A. Revising the birth record form (Form IE-21) to include all UNESA-recommended information and to

exclude the perinatal information and other superfluous information; B. Implementing the separate perinatal death form which has been drafted, but revise it to include all

WHO-recommended elements and to exclude superfluous information. 3.3 Coverage of birth and death registration 22The certifier is the person who certifies the fact of death or foetal death, and who in the case of death also certifies the circumstances (accident, suicide, homicide, natural causes) and the specific disease, injury or other cause(s) of death. Data should be collected in such a way as to permit classification of deaths according to whether the death was certified by a physician or surgeon who attended the decedent in his terminal illness, a medical practitioner who examined the body after death, a coroner or other medical-legal authority, a midwife, a nurse (other trained person) or a layman. (UNESA 2001, p.39)

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In 2010 there were 19 113 deaths and 24 296 births registered in Macedonia. The CRO’s qualitative assessment of current coverage of birth registration is virtually 100%, possibly missing some Roma who are reluctant to register, and occasionally the very early infant death. The latter are, however, are usually registered since their birth and death information is conveyed directly to the registrar by the hospital even if the parents do not register it.(Note, Macedonia implemented the international live birth definition in 1992.) The last 2005-2006 MICS estimates that 94% of births were registered (SSO 2007); similarly, the WHO global assessment of Macedonia’s birth registration coverage from 2005-2010 quoted 94% (WHO 2012). The 2011 MICS survey will give an updated estimate of birth registration coverage among children under five years (forthcoming).

The CRO’s qualitative assessment of death registration coverage is also high, allowing for some deaths potentially unregistered where there was no incentive. Deaths that occurred several years ago, and for whatever reason were not registered in a timely fashion, are increasingly registered even years later; there were about 2 200 late death registrations in the past year, a trend that indicates that people are increasingly striving to comply with compulsory death registration. The WHO global assessment of Macedonia’s death registration coverage is also high, 99% from 2000-2010. Among the six countries in the former Yugoslavia, Macedonia is one of the three with virtually complete coverage (Figure 5). The quality of cause of death data is ‘medium quality’, and this is examined further below.

Figure 5. Coverage and quality of cause of data for Macedonia and neighboring countries

Source: WHO 2012 3.4 Certification and coding of cause of death

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Macedonia has provided annual mortality data, by detailed causes and sex and age groups, to WHO mortality databases from 1997 to 2003 in ICD-9 format, and from 2006 to 2010 in ICD-10 format23. The data for years 2004 and 2005 were not submitted to WHO, for reasons possibly related to the transition from using ICD-9 to ICD-10 codes starting in 2003. The SSO provides the international community with annual ICD-10 data in detailed 3-digit codes although the original coding is in detailed 4-digit codes24. The ICD-10 reference books are translated into Macedonian language based on the 1992 version of ICD.

The coding of death registration is done at national level. The SSO receives the original medical certificates of death, with physician certified causes of death, on a monthly basis from eight regional statistics offices. Since 1983 the SSO has contracted a team of about 10 coders from the Institute of Epidemiology. Coders from the Institute of Epidemiology go to the SSO on a regular basis to assign the ICD-10 codes on the original medical certificate. Specialists from the Institute for Health Care of Mother and Child also advise on coding for causes of death for infants under one year. The SSO then enters the information into the SSO database and logical checks are made. In general, this procedure works well because it ensures that coding practices are standardized across a small group of consistent coders, with the most experienced ‘super coder’ supervising overall quality. The problem, however, is that the coders currently are not able to contact physicians for clarification and consequently there is a large proportion of ill-defined causes. This is the main reason for ‘medium quality’ mortality data instead of ‘high quality’ (Figure 5 above).Since coders from the Epidemiology Institute code on a monthly basis, and the number of deaths certified by physicians in a month are relatively small, contacting physicians for clarification has great potential for improving the accuracy of cause of death coding.

There are two types of Ill-defined causes of death: Symptoms, signs and abnormal clinical findings not elsewhere defined (ICD-10 Chapter XVIII, R00-R99), and vague or unspecific diagnoses that may be found throughout most of the other ICD-10 chapters. In Macedonia 2010, ill-defined cause of death is the fifth cause of death among men and among women; and it is tied for second-place among children 1-4 years. As a general principle, the proportion of ill-defined or unspecified underlying cause of deaths should not exceed 10% for deaths at ages 65 years and over, and should be less than 5% for deaths at ages below 65 years (Abou Zahret al. 2010). The level in Macedonia exceeds this, ranging from17-19% from 2006 to 2010 for both types of ill-defined. Taking into account the standardized level of ill-defined causes (R00-R99 only), the quality of cause of death data is below most other European countries except for Georgia and Montenegro (Figure6). Figure 6.Inter-country comparison of standardized death rates for ill-defined causes of death (ICD-10: R00-R99), 2009 or 2010

23 WHO Mortality database, http://www.who.int/healthinfo/morttables/en/; European Detailed Mortality Database, World Health Organization Regional Office for Europe, http://data.euro.who.int/dmdb/ 24Reporting 3-digit detailed ICD-10 coding fulfills the minimal requested format for WHO. However, since the ICD coders routinely code to the full 4-digits, and since the EU requests 4-digit coding among the list of variables to send to Eurostat (EU Commission Regulation 2011), then SSO may consider submitting full 4-digit codes to the international community.

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Source: European detailed mortality database, http://data.euro.who.int/dmdb/

In general across countries, ill-defined causes of death tend to be worse for deaths at older ages, when there may be multiple causes of death. Older deaths are difficult to diagnose since many elderly persons die at home and there may be a multitude of confounding health problems contributing to the death. In Macedonia, as in other countries in the region, the rate of ill-defined causes raises sharply with age (Figure 7). With ICD-10 death certification training and monitoring to ensure good certification and coding practices it should be possible to reduce this proportion of ill-defined death to less that 10% of deaths among the elderly.

0 50 100 150 200

Hungary 2009Ireland 2010Iceland 2009Finland 2010

Malta 2010Italy 2009

Republic of Moldova 2010Croatia 2010

Romania 2010United Kingdom 2010

Slovenia 2010Slovakia 2010

Czech Republic 2010Spain 2010

Lithuania 2010Luxembourg 2009

Estonia 2010Germany 2010

Kyrgyzstan 2010Netherlands 2010

Sweden 2010Israel 2009

Cyprus 2010Norway 2010Bulgaria 2010

France 2009Serbia 2010

Poland 2010Latvia 2010

Portugal 2010TFYR Macedonia 2010

Montenegro 2009Georgia 2009

Deaths per 100 000

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Figure 6.Distribution of deaths (logarithmic scale) by age group and ill-defined causes of death (ICD-10: R00-R99), Republic of Macedonia and neighboring countries, 2010 or latest available data

Note: No data available for Greece and Albania. Source: WHO European detailed mortality database, http://data.euro.who.int/dmdb/

The quality of mortality data should be monitored routinely so that any problems or anomalies in levels or causes of death can be addressed before finalizing or disseminating the dataset. Currently, SSO conducts logical checks on the cause of death data and shares them directly with international partners, prior to an overall assessment of levels and causes of death. A systematic assessment of the data could be carried out by the IPH and/or Institute of Epidemiology simply by using, for example, the WHO ANACoDtool25. The input data for the ANACoD consists of population totals by age and sex, the number of deaths by age and sex, and the underlying cause of death in ICD-10 3- or 4-charactercodes. ANACoD automated output provides several indicators that reveal potential data quality issues as well as standard indicators including sex and age-specific mortality rates, crude death rates, life expectancy at birth, distribution of deaths by three Global Burden of Disease categories, estimated coverage of deaths, the top 20 causes of death, and the percentage of ill-defined cause of death codes. Selected results from ANACoD for Macedonia 2010 cause of death data are presented in Annex 5.

The coding team from the Institute of Epidemiology was briefed on the status of new ICD-11. The

completion of ICD-11 is scheduled for 2015, after which there will be a period of transition for countries to implement it. In the meantime, Macedonia as well as other countries is encouraged to register as

25ANACoD, ‘Analysis of Mortality Levels and Causes-of-Death’, consists of automated Excel spreadsheets developed in 2011 by the World Health Organization, in collaboration with Queensland Health Information Systems Knowledge Hub and Health Metrics Network. This tool is freely available upon request.

0,1

1

10

100

1000

10000

< 1

year 1-4

5-9

10-1

415

-19

20 -

2425

-29

30 -

3435

-39

40 -

4445

-49

50 -

5455

-59

60 -

6465

-69

70 -

7475

-79

80 -

8485

+

TFYR Macedonia 2010

Slovenia 2010

Serbia 2010

Montenegro 2009

Croatia 2010

Bulgaria 2010

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participants on the ICD-11 platform in order to make comments, to provide translations, and to inform discussions related to field testing or reviews that will take placed through this forum26. Recommendation 5. Improve the quality of cause of death data, including reducing the percentage of ill-defined causes, by: A. Incorporating regular ICD-10 death certification training for medical student, and refresher training

for physicians, on the importance of correctly and completely filling the death certification form; B. Facilitating access by coders to contact information of certifying physicians so that they may clarify

in a timely fashion any incomplete, illegible, or otherwise deficient information on the death certificate;

C. Monitoring data quality by establishing a mechanism for routinely conducting a systematic review of data quality using, for example, the WHO ANACoD tool.

Area 4. Maternal and early infant mortality The overall situation of mothers and children is monitored in two ways: 1) the UNICEF MICS survey conducted on a 5-year basis, and 2) the annually published report on the status of these two population groups by specialists at the Institute for Health Care of Mother and Child in Skopje. The latter report is based on routinely reported data on infant deaths, stillbirths and abortions that are provided by the SSO (Janeva 2012). 4.1 Maternal deaths In the most recent global assessment of maternal mortality, Macedonia was among the 65 countries with vital registration data characterized as complete, with good attribution of cause of death (WHO et al. 2012, p.49). However, as noted in the same assessment report, misclassification of maternal deaths happens in all countries, even those with adequate vital registration systems like Macedonia. [Misclassification occurs when a death from a maternal cause is mistakenly assigned a code other than one for a maternal cause (ICD-10 codes O00–O99, excluding O96 and O97 for late maternal deaths, or maternal tetanus code A34).] The only way to ascertain the extent of misclassification is to systematically review maternal deaths, either by a special study or by establishing an audit27. In 2010, there were a total of 392 deaths of women of reproductive age in Macedonia, of which only two deaths were attributed to a maternal cause. There are currently no mechanisms or procedures in place for a systematic review of the circumstances surrounding the deaths of women of reproductive age.

An approach to identifying potentially misclassified maternal deaths is to revise the death certification form. In particular, WHO recommends that pregnancy-related deaths and late maternal deaths be captured on the medical certificate of death form28:

26 Information and registration for participation in ICD-11 revision, http://www.who.int/classifications/icd/revision/en/index.html 27 For information on maternal death audits, see the World Bank article, Maternal Death Audit as a Tool for Reducing Maternal Mortality (2011) http://siteresources.worldbank.org/INTPRH/Resources/376374-1278599377733/MaternalDeathAuditMarch22011.pdf 28“In order to improve the quality of maternal mortality data and provide alternative methods of collecting data on deaths during pregnancy or related to it, as well as encourage the recording of deaths from obstetric causes occurring more than 42 days following termination of pregnancy, the 43rd World Health Assembly in 1990 adopted

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“A pregnancy-related death is the death of a woman during pregnancy, childbirth and

puerperium or within 42 days of termination of pregnancy, irrespective of the cause of death (obstetric and non obstetric)” (WHO 2010, p.156).

“Late maternal death is the death of a woman from direct or indirect obstetric causes more than

42 days but less than one year after termination of pregnancy” (WHO 2010, p.156).

Such additional information would permit monitoring the proportion of pregnancy-related deaths to maternal deaths, and also inform the maternal review process of deaths that are more likely to be misclassified maternal causes. Figures 7a and 7b show examples of death certificates from the United States and from Turkey that include the recommended questions.

Figure 7a. Extract from Turkey death certificate

G If female

� Death occurred during pregnancy

� Death occurred during delivery

� Death occurred within 42 days after pregnancy

� Death occurred between 43 and 365 days after pregnancy

� Not maternal mortality

7b. from US death certificate

36. IF FEMALE: � Not pregnant within past year � Pregnant at time of death � Not pregnant, but pregnant within 42 days of death � Not pregnant, but pregnant 43 days to 1 year before

death � Unknown if pregnant within the past year

Recommendation 6. Reduce the number of misclassified maternal deaths by: A. Establishing a maternal audit mechanism for systematically reviewing the circumstances

surrounding the deaths of women of reproductive age; B. Revising the medical certificate of death to include the WHO-recommended questions regarding 1)

pregnancy status at the time of death, regardless of the cause of death, and 2) whether the woman was pregnant within one-year preceding death.

4.2 Early infant (and stillbirth) deaths Official statistics that are related to newborns and early deaths are disseminated through various national (e.g. State Statistical Office and Institute for Maternal and Child Health Care) and international sources (e.g., databases on WHO websites and UN publications). The unadjusted estimates are consistent across the different sources which indicates that the national data collection mechanism for vital statistics is not fragmented (Table 5). The adjusted estimates by WHO and UN partners are slightly higher than the unadjusted estimates due to corrections for estimated incompleteness of reported

the recommendation that countries consider the inclusion on death certificates of questions regarding current pregnancy within one-year preceding death” (WHO 2010, p.156).

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births and deaths (adjustment methodologies are described in the relevant publication). The unadjusted under-5 child mortality and maternal mortality indicators fall within the confidence intervals of the adjusted estimates; the infant and neonatal mortality indicators, however, fall below the lower confidence bound of the estimated value indicating potential underreporting of these early deaths (see also Annex 6). Table 5. Comparison of statistics related to newborns and early infant and fetal deaths, 2010

Adjusted estimates Unadjusted estimates UN and WHO

publications Official national

estimates b WHO Mortality

database WHO Health for

All database Number of live births

[est. 94% of births registered, 2005-

2010]a

24296 24296 24296

Infant mortality per 1000 live births

10 [8.2-10.8]c

7.6 7.7 7.6

Under-5 mortality 12 [9.0-12.1]c

8.3 8.5 8.4

Neonatal mortality 7.1-6.7c na na 5.5 Stillbirths per 1000 total births

6 (last est., 2009)a 8.6 na 8.6

Perinatal mortality 16 (last est., 2000)d 12.6 na 12.6 Maternal mortality per 100 000 live births

10 [3-31]e

8.2 8.2 8.2

Abortions per 1000 live births

na 209 na 209

a World Health Statistics(WHO 2012) b State Statistical Office [Republic of Macedonia] and State Statistical Office (Janeva 2012) c UN Inter-agency Group for Child Mortality Estimation released the latest estimates on child mortality.http://www.childmortality.org/ (Last update: 13 Sept 2012) d Neonatal and Perinatal Mortality Country, Regional and Global Estimates (WHO 2006) e Trends in maternal mortality: 1990 to 2010 (WHO, UNICEF, UNFPA, and The World Bank2012).

The 2011 MICS survey will provide population-based infant and child mortality estimates for a recent 5-year period and thus facilitate another comparison with the unadjusted estimates (forthcoming). It will also be especially important to examine the estimated percentage of births under 5-years of age that have been officially registered, compared to the 94% of births that were registered in the 2005-2006 MICS (SSO 2007). These survey indicators, in particular early childhood mortality rates and coverage of birth registration, could give further clues as to whether there may be underreporting of early infant deaths.

In addition to early childhood deaths, information on abortions and stillbirths should also be

available from the 2011 MICS survey. Regarding abortion statistics from routinely collected data, there may be some level of underreporting of these events, and thus also in the indicator in Table 5. Abortions are conducted legally until a certain gestational age only as surgical procedures in hospitals; however, it is suspected that public and private ambulatory clinics also perform abortions using the vacuum aspiration procedure and may not report these illegal procedures.

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In order to identify potential underreporting of early infant deaths, and stillbirths, an indirect assessment approach using the methodology set forth in Hill & Choi 2006 would help determine if there were a problem and to ascertain the extent of the problem. In addition, WHO’s Neonatal and perinatal mortality assessment (2006), although outdated, offers useful approaches to assessing levels of early infant deaths and stillbirths. Since there is reportedly adequate equipment in maternities for accurately identifying and recording information on LBW infants, any underreporting may be due to the occasional lapse in strictly applying the international live birth definition. Area 5. Health system performance The national health strategy document, ‘Strategy of the Republic of Macedonia 2020 for Safe, Efficient and Just Health Care System’, does not prioritize monitoring of the overall health system performance to inform policy (MOH 2007). The rationale for performance measurement is set forth in the 2008 WHO European Ministerial Conference on Health Systems, ‘Health Systems, Health and Wealth’ (WHO 2008). Health performance domains include, for example, input variables on productivity, health outputs in terms of service availability and quality, health outcomes such as service utilization and coverage of preventive health interventions, and impact on population health measured by mortality or morbidity levels. Typically, each of these domains would be associated with key indicators and, assessed relative to one another, would provide insight into health system performance. Figure 8 is an example of an assessment framework for the monitoring and evaluation of health system performance. Figure 8. Framework for monitoring health system performance

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Source: WHO Department of Health Statistics and Informatics c.2010

The evaluation of health system performance on health impact indicators, namely mortality and morbidity, is often accompanied by setting future targets to reduce disease burden and monitoring progress toward the target. For example, a target may be defined to reduce the number of premature NCD deaths by a certain percentage over a defined period of time. When setting and monitoring such targets population ageing needs to be taken into account. That is, there will naturally be an increased number of deaths as larger proportions of the population moves into the age groups at high risk of dying. Over time, population ageing will result in larger number deaths in the absence of interventions, and will appear to attenuate the impact of even successful intervention measures. Monitoring progress is accurately is furthermore a challenge given the uncertainty of the population denominators—any monitoring will likely need to be recomputed when new census information is available.

Finally, as illustrated above (Figure 8), health outcome indicators and health impact indicators are computed from various sources of data including population-based surveys, clinical reporting systems (routinely reported data), and vital statistics. These sources of data have been discussed extensively in this report, except for population-based surveys. Population-based surveys, also called national surveys or household surveys, provide nationally-representative estimates on many indicators that are often not possible to obtain from other data sources e.g., exposure to risk factors, coverage of services, self-reported health status, knowledge of transmission and treatment, etc. In addition, surveys provide information to identify and quantify health inequalities between population groups, by demographic and/or socioeconomic background characteristics.

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Macedonia has some important information gaps related to survey data. For example, like other

European countries, has a high burden of noncommunicable diseases; however, except for the national MICS survey conducted in 2005-2006 and 2011, the surveys conducted in the past decade have been mostly focused on targeted populations and do not include NCD-related measures for the general or adult population, e.g. 2007-2008 Global School-based Health Surveillance System (Tozija et al. 2008); 2003 and 2008 Global Youth Tobacco Surveys in Macedonia (GYTS)(Kosevska2003, Kosevska et al. 2009); 2009-2010 Health behaviour of school children study (HBSC) (Currie et al. 2012a); 2005 Behavioral and Serological Survey among hard to reach populations (unpublished); and 2011 Macedonia National Nutritional Survey (IPH & UNICEF c.2011). These surveys indicate a demand for information from targeted programs, and it suggests that there exists some level of survey capacity in the country. The IPH has been an important implementation partner involved in fielding most of these surveys; the SSO conducted the MICS 2005-2006 (but was not available to conduct the 2011 MICS, conducted instead by a private company) and has reportedly good sampling and survey processing capacity.

In order to update Macedonia’s national survey program to fill certain information gaps, it would be

worth investigating the population-based health-related European Health Information Survey (EHIS) which EU member states conduct every 5-years to monitor noncommunicable disease burden29. Standardized modules in the EHIS cover the following topics:

• height and weight, which form the basis for the calculation of the body mass index (BMI); • self-perceived health; • activities that have been reduced because of health problems; • long-standing illnesses or health problems; • smoking behaviour; • alcohol consumption.

Recommendation 7: Fill information gaps for population-based measures, including those needed to monitor health system performance, by updating the national survey program to include regularly administering standard modules such as those in the European Health Information Survey (EHIS). Conclusions and summary of recommendations The purpose of the mission to Skopje was to assess the quality and flow of health and demographic statistics in Macedonia, especially as regards the integration and use of birth, death, and cause of death information. The mission was successful in providing many insights into strengths and weaknesses of the health information and vital statistics systems.

On the one hand, the mission revealed active planning by most of the key institutions to develop web-based reporting, using mainly local IT capacity. Most of the efforts were beyond the planning phase and already advanced in the development and even early phases of functioning. Institutions have dedicated workforces, although notably short-staffed in Institute of Public Health and the regional Centers of Public Health. Overall quality of routine data is good in terms of coverage and timeliness, and there is the intention to improve further the accuracy, “… still not satisfied, there are inconsistencies, flaws, but we are open and willing to improve and move in the right direction [Director of the National

29 European Health Interview Survey, http://epp.eurostat.ec.europa.eu/statistics_explained/index.php/Glossary:European_health_interview_survey_%28EHIS%29

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Institute of Public Health, 4 December 2012] .” Overall there is a respectable history of processing routine information to produce regular publications and to make them available on websites. All of the institutions are conscientious about safe-guarding patient confidentiality. Although there was not time during the mission to visit reporting units, the visit with the regional Center of Public Health confirmed proactive measures to improve the efficiency of data collection and transform data into useful information for regional planning and management. On the other hand, there is still a balance to be struck to ensure that rapid developments will be harmonized to improve also the efficiency of producing public health information. While the MOH Sector for Modernization Management in Health and IT is planning to develop an automated patient-level reporting system, there appears to be a disproportional focus on the complex details of patient management with relatively little attention to coordinating with IPH to ensure improved efficiency in obtaining needed public health information. In addition, while the Sector also plans to undertake research and analysis, health care promotion, and monitoring and evaluation, and these functions are similar to those of the Institute of Public Health, the activities will need to be harmonized between the two groups.

Numerous challenges are ahead for synchronizing data collection and exchanges, both from a technical, IT perspective as well as from an administrative perspective. While it is evident that the technical capacity to develop systems is strong and growing in R. Macedonia, it is critical that key decision-makers also talk and agree to harmonize necessary legislation and details of data exchanges. This requires strong leadership and commitment to working towards the common goal of establishing an integrated health information system that is created, adopted, and implemented in communication between national partners, to efficiently obtain health statistics and strengthen capacity for producing useful information for decision making at all levels.

Below are the main recommendations that are also found in the body of the report. The reader is encouraged to refer to the recommendations in the report in order to understand the context in which they were formulated. The reader will also find detailed observations in the text with suggested approaches for further improvement or investigation. It was decided to leave these in the text as considerations, and thus put more weight on fewer recommendations but for more pressing issues. Recommendation 1. Seek an expedient resolution to obtaining and disseminating up-to-date population estimates in order to: 1) provide an up-to-date sample frame used for designing nationally representativesurveys, and 2) provide accurate denominators for many health-related indicators, including mortality and morbidity. Recommendation2. Plan and implement an on-line integrated data warehouse in line with international standards, including:

A. Interoperability with other software platforms being developed by institutions collecting or processing health-related information;

B. User-friendly, dynamic access to data on the website for outside users in order to promote wider use of data and creative approaches to more informative analysis.

Recommendation 3. National institutions responsible for managing health-related data, including MOH, IPH, HIF, SSO, and MOJ/CRO agree on specific terms for exchanging data for scientific or statistical purposes, with personal identification information, in consultation with the Data Protection Agency, and expediently amend laws and security measures in compliance with the Law on Personal Data Protection.

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Recommendation 4. Streamline the collection of birth and perinatal information by: A. Revising the birth record form (Form IE-21) to include all UNESA-recommended information and

to exclude the perinatal information and other superfluous information; B. Implementing the separate perinatal death form which has been drafted, but revise it to include

all WHO-recommended elements and to exclude superfluous information. Recommendation 5. Improve the quality of cause of death data, including reducing the percentage of ill-defined causes, by:

A. Incorporating regular ICD-10 death certification training for medical student, and refresher training for physicians, on the importance of correctly and completely filling the death certification form;

B. Facilitating access by coders to contact information of certifying physicians so that they may clarify in a timely fashion any incomplete, illegible, or otherwise deficient information on the death certificate;

C. Monitoring data quality by establishing a mechanism for routinely conducting a systematic review of data quality using, for example, the WHO ANACoD tool.

Recommendation 6. Reduce the number of misclassified maternal deaths by:

A. Establishing a maternal audit mechanism for systematically reviewing the circumstances surrounding the deaths of women of reproductive age;

B. Revising the medical certificate of death to include the WHO-recommended questions regarding 1) pregnancy status at the time of death, regardless of the cause of death, and 2) whether the woman was pregnant within one-year preceding death.

Recommendation 7: Fill information gaps for population-based measures, including those needed to monitor health system performance, by updating the national survey program to include regularly administering standard modules such as those in the European Health Information Survey (EHIS).

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Gjorgjev D, Bacanovic A, Cicevalieva S, Sulevski Z, Grosse-Tebbe, S. 2006. The former Yugoslav Republic of Macedonia, Health System Review. Health Systems in Transition, Vol 8 No 2.European Observatory.http://www.euro.who.int/__data/assets/pdf_file/0005/96413/E89275.pdf (accessed December 12, 2012)

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Hill K, and Choi Y. 2006. Neonatal mortality in the developing world. Demographic research. Volume 14, article 18, pages 429-452. http://www.demographic-research.org/Volumes/Vol14/18/14-18.pdf (accessed 11 August 2011)

Institute for Public Health. 2012. Health Map of Republic of Macedonia. 2010 http://www.iph.mk/images/stories/PDF%20statistika/PDF2010/zk%20en%20prv%20del%202010.pdf (accessed December 17, 2012)

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Tozija F, Gjorgjev D, Kjosevska E, Kendrovski V, Kasapinov B. 2008. Global School-Based Student Health Results Republic of Macedonia 2007/2008 (GSHS)

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http://www.who.int/chp/gshs/Macedonia_GSHS_2007_Report_English.pdf (accessed December 18, 2012)

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Annex 1. Mission agenda

Аn overview of the current status of integration and functioning of the MKD Health Information System and the Civil Registration and Vital

Statistics Systems, November-December 2012

A G E N D A WHO Consultant Dr Fern Greenwell

03 December (Monday) 09.30 Meeting and briefing with Professor Dr Elena Kjosevska, WHO National Counterpart,

National Institute for Public Health (venue: National Institute for Public Health)

16.00 Debriefing with the Head of Country Office 04 December (Tuesday) 10.00 Meeting with Dr Shaban Memeti, Director, National Institute for Public Health

(venue: National Institute for Public Health)

11.00 Meeting and briefing with the team from the National Institute for Public Health: Dr Dragana Chkalevska, Head of Sector for Statistics, Education and Publications, National Institute for Public Health Dr Vjosa Rechica, Head of Department for education, publication and information, National Institute for Public Health Mr Armend Iseni, Software engineer, Deputy Manager, Department for Health Statistics, National Institute for Public Health

(venue: National Institute for Public Health)

13.30 Meeting with Head of Sectors of the Ministry of Health

Attended: Dr Jovanka Kostovska, Head of Sector for Preventive Health Care, Ministry of Health; Ms Biljana Celevska, Assistant to the Head of Sector for European Integration and International Cooperation (comment: Head of Sector position is vacant); Dr Zoran Stojanovski, Head of Sector for Primary Health Care, Ministry of Health; Ms Zhaklina Cagaroska, Acting Head of Sector for Informatics and Communication Technology, Ministry of Health; Mr Milan Arizankoski, IT specialist, Cabinet of the Minister of Health, Ministry of Health;

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Professor Dr Elena Kjosevska, WHO National Counterpart, Institute for Public Health; (comment: there was no participation from the Sector for Secondary and Tertiary Health Care, the Head o Sector is on extended sick leave and the alternate despite numerous calls from WHO side and the MoH Cabinet did not attended the meeting).

(venue: Ministry of Health) 16.30 Debriefing with the Head of Country Office

05 December (Wednesday) 11.00 Meeting with Mr Ashim Zekiroski, Director of the Office for Management of Registers

of Births, Marriages and Deaths, Ministry of Justice Ms Emilija Andonova, Senior Councilor for Software Development Ms Katerina Bitrovska, Office Spokeswomen Ms Suzana Smilkovska Ristovska, Technical Assistant

(venue: Office for Management of Registers)

15.00 Meeting with representatives from UNICEF and UNFPA

Mr Igor Veljkovikj, Health Officer, UNICEF Skopje Dr Sonja Tanevska, Assistant Representative, UNFPA Skopje

(venue: WHO CO)

06 December (Thursday) 09:00 Meeting with Professor Dr Irina Pavlovska and Professor Dr Kristin Vasilevska, Institute

of Epidemiology and Medical Statistics, Medical Faculty – Skopje (venue: WHO CO)

11.00 Meeting with Mr Jovan Grpovski, Director, Health Insurance Fund

Ms Tatjana Likanovska, Director of Sector for Finances Mr Branko Adzigogov, Director of Sector for Control Ms Luiza Jakimovska, Chief of Director Cabinet

(venue: Health Insurance Fund ) 14: 30 Professor Dr Doncho Donev, Director, Institute for Social Medicine, Medical Faculty –

Skopje, WHO National Counterpart on Noncommunicable Diseases Assistant Professor Dr Vladimir Lazarevik, Institute for Social Medicine, Medical Faculty – Skopje, WHO principal author of the Heath in Transition Profile publication for MKD for 2013

(venue: WHO CO)

15:45 Meeting with Professor Dr Fimka Tozija, Head of Department for Control and

Prevention of Injuries and Violence, National Institute for Public Health. WHO National Counterpart on road safety and injuries

(venue: National Institute for Public Health)

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07 December (Friday) 08.30 Meeting with Dr Brankica Mladenovik, Director, Institute for Health Care of Mother and

Child – Skopje Dr Nadica Janevska, specialist in social medicine, Institute for Health Care of Mother and Child

(venue: Institute for health care of mother and child)

10:00 Meeting with Mr Sead Sadikovski, Deputy Director and Mr Valentin Svetagjokovski, Directorate for Personal Data Protection

(venue: Directorate for Personal Data Protection)

11.30 Meeting with Dr Shemsi Musa, Director, Center for Public Health – Skopje Dr Vesna Spirova, Head of Sector for Social Medicine, Center for Public Health – Skopje Mr Abdji Niljazi, IT specialist, Center for Public Health – Skopje Mr Mirko Ivanovski, Head for Economic and Legal Issues, Center for Public Health – Skopje Dr Liljana Andreevska Sinadinovska, Head of Sector for Epidemiology Center for Public Health – Skopje

(venue: Center for Public Health - Skopje) 13.30 Meeting with Mrs Verka Panova, Head of Sector for National Accounts, State Statistical

Office, Ms Tatjana Jovancevska, International Cooperation and European Integration, State Statistical Office Ms Danica Mitkovska, Vital Statistics, State Statistical Office Professor Dr Elena Kjosevska, National Institute for Public Health

(venue: State Statistical Institute) 15:45 Debriefing with Professor Dr Elena Kjosevska and Dr Marija Kisman, WHO Head of

Country Office Translators during the mission: Ms Zlata Brajovikj Gjuroska Mr Igor Stefanovski Mr Filip Filipovski WHO Country Office team: Ms Irena Stefanovska, Administrative Assistant Ms Svetlana Petrusevska, Programme Assistant Dr Marija Kisman, Head of Office

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Annex 2. Map of the 8 statistical administrative regions in Macedonia, and 30 health regions

Source:http://www.vidiani.com/maps/maps_of_europe/maps_of_macedonia/detailed_administrative_map_of_macedonia.jpg

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Source: Institute for Public Health, http://www.iph.mk/images/stories/PDF%20statistika/PDF2010/zk%20en%20prv%20del%202010.pdf

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Annex 3. Roadmap to applying the HMN Framework and standards for country health information systems

Source: WHO/HMN 2008, p 51

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Annex 4. Rapid assessment of national civil registration and vital statistics systems: Summary of results

Area Score

Legal framework for civil registration and vital statistics 100%

Registration infrastructure and resources 78%

Organization and functioning of the vital statistics system 67%

Completeness of registration of births and death 100%

Data storage and transmission 83%

ICD-compliant practices and certification within and outside hospitals 100%

Practices affecting the quality of cause-of-death data 67%

ICD coding practices 100%

Coder qualification and training, and quality of coding 50%

Data quality and plausibility checks 50%

Data access, dissemination and use 100% Overall score 85%

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Annex 5. Summary results from the ANACoD (Analysis of Cause of Death) tool, R. Macedonia

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2010

Source of data: Civil registrationICD level used: ICD-10, 3-character codesIncome group: Upper middle income

Summary statisticsCompleteness of civil registration data 99%

Both sexes Males FemalesCrude death rate per 1000 population 9.3 9.9 8.7% Annual rate of population growth (UN*) 0.22 0.71 2.14Life expectancy at birth (years) 75.1 72.9 77.3

Data quality Number of deaths all cause 19113 10168 8945Total deaths of ill-defined 3454 1805 1649 as % of All cause 18% 18% 18%

Child mortality ratesInfant mortality rate per 1000 live births 7.7Under-5 mortality rate per 1000 live births 8.5

Ratio non-communicable to communicable Ratio of group 2 to group 1 53.0*UN source: United Nations, World Population Prospects the 2010 revision Source of population data:

Age- and sex-specific death rates

Distribution of major causes of death

Both sexes Nos %total Both sexes Nos %total1 Cerebrovascular disease 3818 20.0 1 Prematurity and low birth weight 90 44.62 Inflammatory heart diseases 3029 15.8 2 Other conditions arising during th 20 9.93 Other cardiovascular diseases 1773 9.3 2 Ill-defined diseases (ICD10 R00-R 20 9.94 Ischaemic heart disease 1752 9.2 4 Birth asphyxia and birth trauma 15 7.45 Ill-defined diseases (ICD10 R00-R99) 1250 6.5 5 Other infectious diseases 9 4.56 Trachea, bronchus and lung cancers 802 4.2 5 Other Congenital anomalies 9 4.57 Diabetes mellitus 737 3.9 7 Down syndrome 6 3.08 Hypertensive disease 681 3.6 8 Lower respiratory infections 5 2.59 Other malignant neoplasms 587 3.1 8 Congenital heart anomalies 5 2.5

10 Colon and rectum cancers 382 2.0 8 Road traffic accidents 5 2.511 Stomach cancer 378 2.0 11 Other neuropsychiatric disorders 4 2.012 Chronic obstructive pulmonary disea 321 1.7 12 Meningitis 3 1.513 Breast cancer 311 1.6 13 Inflammatory heart diseases 2 1.014 Nephritis and nephrosis 260 1.4 13 Spina bifida 2 1.015 Other respiratory diseases 227 1.2 15 Diarrhoeal diseases 1 0.5

Summary report on mortality level and cause-of-death dataTFYR Macedonia (2010)

All ages Children aged 0-415 leading causes of death

10 5 0 5 10

0-4

10-14

20-24

30-34

40-44

50-54

60-64

70-74

80+

% of population

Age

Population pyramid

males

females

1

10

100

1000

10000

100000

0-4

5-9

10-1

415

-19

20-2

425

-29

30-3

435

-39

40-4

445

-49

50-5

455

-59

60-6

465

-69

70-7

475

-79

80+

0-4

5-9

10-1

415

-19

20-2

425

-29

30-3

435

-39

40-4

445

-49

50-5

455

-59

60-6

465

-69

70-7

475

-79

80+

Mor

talit

y ra

te p

er 1

00 0

00 p

opul

atio

n

Age

Log of age-specific mortality rates

Country World High income Upper middle Lower middle Low income

Males Females

0.0

0.2

0.4

0.6

0.8

1.0

M00

M1-

4

M05

M10

M15

M20

M25

M30

M35

M40

M45

M50

M55

M60

M65

M70

M75

M80

M85

Prop

ortio

n of

tota

l dea

ths

age

MaleCommunicable

Non-communicable

Injuries

0.0

0.2

0.4

0.6

0.8

1.0

F00

F1-4

F05

F10

F15

F20

F25

F30

F35

F40

F45

F50

F55

F60

F65

F70

F75

F80

F85

Prop

ortio

n of

tota

l dea

ths

age

Female

60 40 20 0 20 40 60

0-4

10-14

20-24

30-34

40-44

50-54

60-64

70-74

80+

% of deaths

Age

Reported deaths pyramid

male female

Final version 2013

47

Annex 6. Infant mortality rates in the R. Macedonia, 1983-2010, various sources

Source: http://www.childmortality.org/index.php?r=site/graph&ID=MKD_Macedonia,%20The%20Former%20Yugoslav%20Republic%20of