Civil Registration and Vital Statistics 2013: challenges, best practice and design principles for modern systems

Transcription

1 Civil Registratio ad Vital Statistics 2013: challeges, best practice ad desig priciples for moder systems

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3 CONTENTS Abbreviatios... v Executive summary...1 Sectio 1. Civil registratio ad vital statistics iformatio systems What is CRVS? The importace of CRVS IS ad their curret eglected state Treds emphasizig the importace of CRVS IS...7 Sectio 2. Curret status ad challeges relatig to CRVS IS Status of iformatio systems for recordig ad otificatio Status of iformatio systems for registratio Status of iformatio systems for vital statistics Key uderlyig characteristics of the existig systems...17 Sectio 3. Best practices of CRVS iformatio systems Examples from developed coutries Examples from low ad middle icome coutries...24 Sectio 4. Challeges ad opportuities for CRVS systems Scalig up Iovatio Itegratio of systems Busiess process streamliig Automatio of CRVS processes...36 Sectio 5. Reflectios o desig priciples for moderizig CRVS IS Five desig priciples A case-study from Tajikista...41 Sectio 6. Coclusios...45 Refereces...49

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5 challeges, best practice ad desig priciples for moder systems ABBREVIATIONS AIDS BCRS BRIS COD CoIA CPR CSB CR CRVS HIS HIV HMN HRS ICT INDEPTH IS MOVE IT MCD NSO PIN SMS UNICEF VA VS WHO WOMB acquired immuodeficiecy sydrome Baragay Civil Registratio System Birth Registratio Iformatio System cause of death Uited Natios Commissio o Iformatio Accoutability Cetral Populatio Register Citize Service Bureau civil registratio civil registratio ad vital statistics health iformatio system(s) huma immuodeficiecy virus Health Metrics Network Household Registratio System iformatio ad commuicatio techology Iteratioal Network for the Demographic Evaluatio of Populatios ad Their Health iformatio system(s) moitorig of vital evets usig iformatio techology Muicipal Corporatio of Delhi Natioal Statistics Office persoal idetificatio umber short message system Uited Natios Childre s Fud verbal autopsy vital statistics World Health Orgaizatio Watchig over Mothers ad Babies v

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7 challeges, best practice ad desig priciples for moder systems Executive summary Withi the domai of public health, iformatio obtaied from civil registratio ad vital statistics (CRVS) is critical, allowig trackig of idividual births ad buildig profiles of mortality ad causes of death. These data play a fudametal role i plaig ad moitorig public health outcomes, as well as a broad rage of outcomes i other policy domais. CRVS iformatio systems (IS) may be paper based or icreasigly techology-drive, ad icorporate multiple busiess processes icludig: recordig of all details related to the vital evet, for example a birth or a death; otificatio of the evet to the authorities; registratio of the evet; ad geeratio of VS. A variety of actors are ivolved i the recordig, otificatio ad registerig of these vital evets, as well as i the use of the system s outputs. The ivolvemet of multiple istitutios ad actors i CRVS makes coordiatio ad goverace a key challege i buildig effective CRVS IS. I recet times, there have bee various efforts i coutries to haress the potetial of techologies, computer ad mobile based, to stregthe CRVS IS ad the CRVS as a whole. This report seeks to study experieces ad best practices of such systems from differet coutries. This aalysis helps to idetify best practices associated with well-fuctioig systems, ad also the various desig ad implemetatio challeges that exist ad potetial approaches. A key effort is made to idetify how existig best practices from well-fuctioig systems i both developed coutries ad low ad middle icome coutries ca be adapted ad applied to others egaged i curretly stregtheig their CRVS IS. Cosiderig the experieces of coutries across the developmet spectrum, the challeges ad opportuities for CRVS IS are idetified as scalig up, iovatio, itegratio of systems, busiess process streamliig ad automatio of CRVS processes. Five desig priciples are proposed i this report to support improvemet of CRVS IS: (a) establish CRVS as a public good; (b) establish istitutioal icetives to keep the CRVS updated ad of good quality; (c) establish a holistic approach to CRVS desig; (d) establish the busiess relatioships of idetified iformatio flows; ad (e) develop the techical approach for operatioalizatio of these relatioships. 1

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9 challeges, best practice ad desig priciples for moder systems SECTION 1. CIVIL REGISTRATION AND VITAL STATISTICS INFORMATION SYSTEMS 1.1 What is CRVS? Civil registratio ad vital statistics (CRVS) systems are cocered with the legal registratio ad aalysis of vital evets i the populatio. Vital evets iclude births, deaths, marriages, divorces, foetal deaths, aulmets, judicial separatios ad adoptios, ad through the registratio process these evets are made legal ad legitimate. Civil registratio (CR) is defied by the Uited Natios as the uiversal, cotiuous, permaet ad compulsory recordig of vital evets provided through decree or regulatio i accordace with the legal requiremets of each coutry (1). Vital Statistics (VS) represets the statistical output of a well-fuctioig CR system (2). CR ad VS systems are itrisically itercoected, ad their combied iformatio systems (IS) are termed Civil Registratio Vital Statistics Iformatio Systems (CRVS IS). A well-fuctioig CRVS IS has i recet times bee recogized as a key igrediet i stregtheig CRVS systems i geeral, ad the Uited Natios Commissio o Iformatio Accoutability (CoIA) for Wome s ad Childre s Health has especially madated that coutries would eed to stregthe their CRVS IS. Specifically, Recommedatio 1 of CoIA poits to the key issue of systematic registratio of vital evets, statig: By 2015, all coutries have take sigificat steps to establish a system for registratio of births, deaths ad causes of death, ad have well-fuctioig health iformatio systems that combie data from facilities, admiistrative sources ad surveys. (3). Withi the domai of public health, data from the CRVS IS are critical, allowig trackig of idividual births ad buildig profiles of mortality ad causes of death. These data play a fudametal role i plaig ad moitorig of public health outcomes, for example relatig to immuizatio plaig, ad moitorig of broader developmetal process idicators such as for materal ad ifat deaths, sex ratios ad fertility rates. A effective CRVS ca help esure erolmet of every child ito immuizatio programmes, ad VS idicators ca be tracked to better support the prevetio of avoidable diseases. If draw from a well-fuctioig CRVS system, these data also provide rigorous mortality data which are of sigificat public health cocer, icludig those cocerig the huma immuodeficiecy virus ad acquired immuodeficiecy sydrome (HIV/AIDS), tuberculosis ad malaria. CR is crucial for idividuals to establish legal idetity ad to access public health services, while VS provides essetial iformatio about the demographics ad health of the populatio, makig policies more effective ad resposive to the eeds of society. CRVS systems are also fudametal to various developmet processes other tha health, such as relatig to social security, literacy ad educatio, law ad order, idetity ad differet forms 3

10 Civil Registratio ad Vital Statistics 2013: of citize services. Sice CRVS by defiitio is multisectoral, a variety of actors are ivolved i the recordig, otificatio ad registerig of vital evets (citizes, health-care workers, doctors, police officers, clerics, ad miistries of health, justice ad home affairs, for example) ad the use of its outputs (such as health authorities, tax authorities ad policy-makers). The ivolvemet of multiple istitutios ad actors i CRVS makes coordiatio ad goverace a key challege i buildig effective CRVS IS. I practice, CRVS systems ted to be fragmeted ad compartmetalized: differet sectors, for example health, populatio statistics ad social security, are typically ot able to access the same database ad to geerate VS directly from the CR system. Arguably, providig such access requires CRVS IS to be treated as a public good, beig able to support decisio-makig for a multiplicity of sectors (4). VS o births ad deaths is crucial iformatio for policy-makig ad plaig ad for the guidace of health programmes at the global level as well as across atioal health systems. Where CRVS systems are weak ad differet sectors are ot liked, plaig icludig for health must rely o cesus data, which are typically iadequate as they are of decadal frequecy ad lack the right level of graularity. Cotributig to this situatio of poor itegratio of systems ad iter-istitutioal data sharig is the fact that CRVS i low ad middle icome coutries have bee largely paper based ad maual. I recet times, there have bee various efforts i coutries to haress the potetial of techologies, computer ad mobile based, to stregthe CRVS IS ad the CRVS as a whole. For example, i Sri Laka, there has bee use of scaig ad digitizig techologies to automate their paper records. These efforts are reflected i a sigificat icrease i the volume of global ad regioal activities to stregthe systems, icludig of the Uited Natios i Africa, the Arab states, Asia ad the Pacific, ad the global attetio of iteratioal parters as a result of the Bagkok Call to Actio i There thus ow exists a large base of experieces from both developed coutries ad low ad middle icome coutries from which we ca lear what works ad what does ot, ad draw guidelies to support future efforts. This report cotributes to that aim. Coutries such as Australia, Demark ad Norway have strog ad itegrated CRVS IS supported by istitutioalized goverace structures, ad various low ad middle icome coutries such as Albaia ad Egypt have made impressive progress i stregtheig their respective CRVS systems, icludig the supportig IS. However, despite these exceptios, by ad large the situatio i may low ad middle icome coutries suggests that CRVS IS are ot up to satisfactory levels i terms of coverage ad quality of registratio data, ad i the maer i which this data is aggregated, used ad shared across the istitutios ivolved. Weak IS have adverse iflueces o multiple coected systems of idetificatio, health services, issuig of passports, ad various others. Buildig a well-fuctioig CRVS IS remais a o-trivial challege, give its multisectoral ature. The CRVS IS eeds thus to spa systems of systems, ivolvig desig approaches that are differet from what is used for idividual systems (5). These are by defiitio techically ad istitutioally complex to build ad use. 4

11 challeges, best practice ad desig priciples for moder systems A key challege i makig CRVS IS multisectoral i practice (icludig sectors such as health, populatio registries, justice ad others) is to develop strategies for the differet systems to commuicate ad share data (5). But eablig commuicatio ad sharig data is ot eough the differet compoets must be iterdepedet i a ecological framework that mutually icetivizes the productio, sharig ad cosumptio of quality data. However, such thikig, ufortuately we may add, has escaped the CRVS ad Health Iformatio Systems (HIS) reform efforts, leadig to piecemeal ad fragmeted systems. For example, the Health Metrics Network (HMN) report (6) has described as a lost opportuity the way that data o births ad deaths beig captured i the routie HIS of a coutry do ot ecessarily itegrate with CRVS registratio records. Creatig such multisectoral likages would be mutually beeficial for the participatig sectors, but practical ad research-related kowledge is limited o how this ca be effectively doe i practice. I order to stregthe our kowledge of the ature of this multisectoral CRVIS IS, with its iheret techical ad istitutioal challeges (6), ad how they ca be desiged, developed ad implemeted, this report studies experieces of such systems from differet coutries. This aalysis helps to idetify best practices associated with well-fuctioig systems, ad also the various desig ad implemetatio challeges that exist ad approaches to meet them. A key effort here is to see how existig best practices, from both developed ad low ad middle icome coutries, ca be adapted ad applied to other coutries, especially the latter group that is curretly egaged i stregtheig their CRVS IS. A key objective of this report is to provide a overview of the status of some coutry CRVS IS, with a view to aswerig the followig specific questios. 1. What are relevat desig guidelies for the buildig of itegrated CRVS IS? 2. What guidace ca be provided to global developmet parters, doors ad atioal policy-makers o how to ivest i iformatio ad commuicatio techology (ICT) iitiatives to stregthe CRVS systems? The report aalyses five key themes ad the associated opportuities, challeges ad approaches. These are scalig up, iovatio, itegratio of systems, busiess process streamliig, ad opportuities for automatio. Scalig up relates to the process of takig itervetios from pilot projects ito workig solutios across admiistrative levels, iteragecy ad expasio i terms of geographical areas, fuctioality ad time; iovatio is the capacity to carry out ew tasks with techological itervetios, or usig ew techology to address hard-tohadle problems; itegratio of systems relates to the techical ad istitutioal issues of makig differet systems commuicate ad share data; busiess process streamliig is the capacity to desig itervetios that support a sustaiable flow of high quality iformatio betwee differet etities; ad opportuities for automatio relates to the potetial of usig digitized ad computerized iformatio systems i terms of triggerig actios ad drivig processes, ad buildig itercoectios betwee sub-processes. 5

12 Civil Registratio ad Vital Statistics 2013: 1.2 The importace of CRVS IS ad their curret eglected state CRVS represets key istitutios of a coutry as well as providig a basis for assessig a coutry s status ad developmet i geeral. Most low ad middle icome coutries have iadequate CRVS IS, cotributig to the ufortuate situatio where may births ad deaths are ot beig registered, described as the scadal of ivisibility (1). A well-fuctioig CRVS IS has i recet times bee recogized as a key igrediet i stregtheig CRVS activity i geeral, exemplified by the CoIA recommedatios. There is emergig evidece that techology ca play a critical role i esurig that births, deaths ad causes of deaths are registered ad that quality iformatio is available to iform coutry ad global developmet priorities. Both the Uited Natios Childre s Fud (UNICEF) ad HMN have sposored activities i coutries to stregthe CRVS systems through iovative use of ICT iitiatives. However, there is yet o guidace for coutries, iteratioal developmet parters or doors regardig appropriate techologies ad architecture desigs ad priciples to be promoted or ivested i a CRVS system. So, despite icreasig emphasis o CRVS IS, ad growig ivestmets i techology, it ca broadly be iferred that the state of these systems i most low ad middle icome coutries teds to be below desired satisfactio levels, ad that ICT itervetios have ot yielded desired beefits as yet. Most low ad middle icome coutries have CRVS IS that are primarily paper based, ad may of them are i the process of applyig ICTs for their moderizatio. The Health Metrics Network, a secretariat of the World Health Orgaizatio (WHO), iitiated i 2007 a set of projects called Moitorig of Vital Evets usig Iformatio Techology (MOVE IT) which explicitly sought to uderstad how ICTs ca be iovatively applied to stregthe CRVS systems. Various coutries, such as Albaia, Bagladesh ad Liberia, have also udertake ICT-based CRVS reform iitiatives either o their ow or with support from door agecies. But the success of these iitiatives does ot mirror the ivested efforts. A recet survey of ecrvs ad mcrvs iitiatives i low ad middle icome coutries (6) has idicated that may of these iitiatives remai o a small scale ad at a pilot level; as such, they have ot delivered to their promised potetial ad the impact o actually reformig the CRVS systems has remaied margial. I the public health domai, while HIS have gaied i importace over the years as a object of research (7), CRVS IS, arguably due to their multisectoral ature, have slipped betwee the cracks ad ot bee systematically studied withi oe domai be it public health, demography or (health) iformatio systems. As a result, there has util recetly ot bee the urgecy ow beig expressed by the research commuity to stregthe CRVS IS. For example, the IFIP 9.4 Workig Group o Social Implicatios of Computers i Developig Coutries, i its last three decades of cofereces, does ot show eve oe paper o CRVS despite its cetrality to developmet processes. As a result of this research eglect, fidigs 6

13 challeges, best practice ad desig priciples for moder systems i the IS domai pertaiig to multisectoral, large-scale ad complex systems such as those emphasizig the architecture approach (5), sociotechical etworks (8) ad flexible stadards (9), despite their direct relevace to CRVS, have ot bee applied to the uderstadig of the domai of CRVS systems. This report thus seeks to eable learig also betwee research commuities ivolvig desig ad implemetatio studies of iformatio systems more broadly ad CRVS IS i particular. 1.3 Treds emphasizig the importace of CRVS IS While computerizatio of CRVS IS has bee aroud for several years, eve i the cotext of low ad middle icome coutries, what is ew today is how systems are becomig icreasigly iterliked with databases that are able to exchage iformatio. Such iterlikig was ot techically possible i the earlier time of stad-aloe, ad ofte paper-based, systems. Iterlikig of databases together with server-based solutios opes up a rage of ew opportuities. For example, it allows atioal databases to coect with registratio offices i districts ad sub-districts, creatig the techical ability for the sub-atioal offices to register ad issue certificates. Furthermore, health istitutios recordig births ca ow potetially trasmit the ame-based records pertaiig to a evet of a birth or a death electroically to the civil registry offices to register the evet. Mobile phoe techology further exteds the geographical ad temporal access to databases, eablig reporters of evets takig place i remote areas to commuicate directly with databases located elsewhere. The possibilities that are beig created through these techologies ad their iterlikig represets ot merely a simple automatio of a paper-based birth or death registratio system, but potetially ushers i a radical trasformatio of how the busiess processes aroud births ad deaths registratio takes place. Haressig the potetial of these techologies will also require the legal processes to be redefied, for example to eable the acceptace of mobile phoe-based otificatios of a birth or a death related evet, for example by usig the short message system (SMS). 7

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15 challeges, best practice ad desig priciples for moder systems Sectio 2. Curret status ad challeges RELATING to CRVS IS The CRVS IS comprises multiple facets icludig: recordig of data where all details related to the vital evet, for example a birth or a death, are oted dow typically at the poit of evet (for example, the health facility or the home) o paper; otificatio of the evet iformig the details of the recorded evet, which i case of death would also ivolve details of the cause of death (COD), to the authorities resposible for the issue of legal documets, for example the Registrar Geeral s Office; registratio of the evet which ivolves the issue of the certificate of registratio; ad geeratio of VS which ivolves the geeratio of aggregate idicators o key health ad developmet idicators by the atioal authorities. A itegrated ad holistic CRVS system should etail data likages across these various facets i a seamless maer, eve if they have their ow respective systems. The differet compoets that comprise the overall CRVS system represet a multiplicity of iformatio flows from differet sources ad agecies, each of which has uique relatios (uilateral or multilateral) with the CRVS system. For example, birth records from health registers may provide the source of registratio i CRVS, while surveys of births ad deaths ca provide a framework for triagulatio ad stregtheig of data quality ad coverage. These relatios will be shaped very much by the legal ad political framework i the coutry. To deal with multiplicity withi this ad other areas ecessarily requires takig a itegrated architectural approach oe that ivolves the relatioship of the differet compoets with each other ad the whole. Surroudig these multiple flows are several stakeholders with their ow IS ad istitutioal arragemets. Gettig istitutioal agreemets for sharig data has ofte bee foud to be more complex tha buildig the techical bridges (5). Doors ofte cofoud this problem by providig support to buildig idividual systems, such as for stregtheig COD reportig, without lookig ito the issue of how these data will iterface with processes of registratio ad geeratio of VS. Such idividual support leads to typically fragmeted systems because the differet compoets are desiged as silos, withi a short-term project framework with strog door depedecies that ecourage a limited focus. As such, these systems are ot istitutioalized as a part of a larger ecology of systems: they remai oe-dimesioal, are either scalable geographically or fuctioally, ad cosequetly are ot sustaiable. Aother key challege i this regard is how to deal with legacy data that historically represet CR data. Most low ad middle icome coutries would have primarily paper-based records of idividual birth ad death records, ad these are ot easily ameable to computerizatio ad thus retrieval ad sharig. Some coutries, such as Sri Laka, have iitiated projects ivolvig the digitizatio of all such records, but progress has bee slow ad also there is still ot a clear 9

16 Civil Registratio ad Vital Statistics 2013: strategy o how they become part of a itegrated CRVS. May others, for example Albaia ad Egypt, have recogized the potetial value of ICT ad have usefully leveraged HMN support to develop iovative prototypes of such itegrated systems. These efforts still eed to cosider the larger challege of movig from prototypes ad pilots to systems of provicial ad atioal scale with sustaiable models to cotiue their evolutio. Little is kow about IS (based o computers ad mobiles) supportig CRVS systems from a systemic ad architecture perspective, which spas the etire CRVS process from recordig the evet, its otificatio ad registerig, ad the issuig of the legal documet surroudig the evet, to its cosolidatio ito VS. The literature presets various examples of descriptios of particular ICT itervetios relatig to limited parts of the overall whole, such as o birth otificatio (10), death registratio (11), COD recordig (12) ad the compilatio of VS (13). While these specific examples provide stories of both successes ad failures for the particular itervetio they practise, they do ot ad caot by desig help to illumiate issues relatig to the trasformatio ad scalability of the overall CRVS system, as they do ot take accout of issues of relatios with other flows ad with the broader cotext. For example, Toivae et al. (14) describe a mobile birth registratio system usig GPRS techology ad smartphoes i Liberia which, while appearig techologically sleek ad cost effective for birth registratio, does ot deal with scalig issues ad egagig with the additioal complexities that scale iheretly ivolves. For the govermet to make every citize cout, or every mother ad child cout, as CoIA madates, the eed is for the techology to help the CRVS systems to achieve full coverage based o good quality data. This requires systems to be scalable both geographically ad fuctioally. Geographical scalig implies full coverage of the whole populatio i which every vital evet be it a birth, death, marriage or other is registered. Fuctioal scalig should eable the capacity to be able to register ad process every type of vital evet ad its compoets i its completeess, ad will also ivolve the ability of the CRVS system to exchage iformatio with associated systems. For example, verbal autopsy (VA) systems collectig COD iformatio should be able to speak to the CR system dealig with death registratio. Similar is the case with surveillace systems ad populatio registries, as they eed to be liked to systems of births ad deaths registratio. I a majority of the cases studied, techology-based itervetios i the CRVS domai have bee applied i pilot or small scale settigs, ad focused towards oe aspect of the system, such as birth otificatio or COD studies, without cosiderig how that speaks to other compoets like the registratio system ad further to the geeratio of the VS. Typically, itervetios ted to be focused o oe or more of these three areas: (a) at the poit of occurrece of the evet (of birth or death); (b) at the poit of creatio of the legal documet (birth or death certificate); ad (c) at the poit of cosolidatio of the VS. Two broad kids of challeges ca be see to characterize these itervetios. First, these itervetios focus 10

17 challeges, best practice ad desig priciples for moder systems o a limited compoet of the overall CRVS system, ad are thus arguably limited to brig i systemic improvemets. Secod, these itervetios by desig are focused towards pilot efforts ad ot to the larger scale of atioal systems. The scalig challege gets further magified, because the pilot iitiatives are door fuded ad ot state owed, ad ted to wither away oce exteral door attetio ad fuds are withdraw. These desig ad implemetatio limitatios are reflective of challeges faced i IS ad HIS more broadly, leadig to a crisis of sustaiability ad scalability of systems (8). Aother key challege relates to the goverace of CRVS IS. Goverace of itegrated systems, or architecture, is based o a focus of how idividual systems both techical ad istitutioal are iterdepedet, how they commuicate ad distribute differet tasks, who makes decisios, ad what icetives exist to participate i the architecture. The origial metaphor of architecture comes from city plaig, where it is importat that systems of utility, water, power, saitatio, sewage ad others are sychroized with each other for the city to work effectively. Despite city plaig efforts, cities, especially megacities i low ad middle icome coutries, are ofte i a state of chaos because they have ot bee able to aticipate migratios, purchase of cars, terrorism attacks, atural shocks such as earthquakes, ad various other evetualities. However, most people will agree that without city plaig efforts, the coditios of cities would be worse tha they curretly are. Effective goverace mechaisms ca help to better uderstad, pla ad implemet ew architectures or to chage existig systems. I doig so, the goverig authorities eed to ackowledge that the future is ot determiate ad ca ever be fully aticipated, so decisios made today should ot block or make irreversible certai paths i the future. This requires a approach to buildig CRVS IS as oe of architectig, as a verb, sigifyig the architecture is ot a fiished product but is somethig that is always i the makig. Goverace should ivolve a holistic perspective to maage curret ad expected future sociotechical heterogeeous compoets that eed to costitute, together, purposeful work systems. For example, there is little poit i itroducig mobile phoes to otify births ad deaths evets if the legal system that oly accepts figerprited or siged otificatios does ot also chage. A effective goverace system should esure these heterogeeous compoets act together with each other, cotributig to the overall stregtheig of the system. I the busiess world, goverace has bee addressed through cocepts of eterprise or busiess architecture to maage sociotechical arragemets of software, hardware, orgaizatioal structures, huma competeces ad icetive schemes (15, 16). I such eviromets, goverace seeks to deal with efficiecy ad effectiveess cocers based o levels of stadardizatio ad itegratio withi large-scale work systems, supportig the overall operatios of the orgaizatio. This eterprise architecture approach is ow also beig adopted i other domais such as the developmet of health iformatio architectures (5). While may of the meta-priciples of eterprise architecture, for example that a architecture 11

18 Civil Registratio ad Vital Statistics 2013: is comprised of three layers of the users, busiess logic ad data exchage, will remai the same i the case of the CRVS, the details of the differet systems ad the stakeholders ivolved ad the specific flows of iformatio will eed to be worked out. These particularities will have implicatios o the goverace of the architecture. Some of the learigs from IS research relevat for CRVS IS goverace iclude: the adoptio of a social systems approach, which emphasizes the historical ad istitutioal cotext, icludig people, data ad istitutioal practices; a emphasis o a holistic approach, which takes ito accout the wide rage of systems ivolved, the relatios betwee them ad the strategies for data exchage; the idetificatio of best practice stadards, as the glue to eable data exchage across the various sub-systems ivolves the adoptio of a modular structure, eablig compoets to be plugged i or out, based o evolvig eeds of stakeholders. Systems i coutries such as Australia ad Norway provide models o how these metapriciples have bee put ito practice, ad ca serve to guide efforts i low ad middle icome coutries with appropriate ad cosidered customizatio. I describig the state of art of the existig CRVS IS, we do it with respect to three broad fuctioal areas o which the systems broadly focus. The first cocers systems for the recordig ad otificatio of a vital evet; the secod cocers the legal act of registratio; ad the third system cocers those related to the geeratio of VS. The very fact that these systems are described separately for these three fuctioal areas reflects the fragmeted ature of the systems that exist. This poit is revisited at the ed of the followig sectios describig the three sets of systems. 2.1 Status of iformatio systems for recordig ad otificatio A sigificat proportio of techology-based iitiatives related to CRVS takes place at the poit of the evet of the birth or death, especially related to births. We ca see the techological itervetios to support three differet kids of activities aroud the vital evet relatig to recordig, otificatio ad registerig of the evet. Recordig refers to the otig dow of all details relatig to the evet, for example with respect to a birth it would iclude details relatig to the ame of the mother, place, type of birth ad address. Notificatio would take place after recordig ad represets the act of official commuicatio of the details of the evet to the authorities resposible for the issuace of the legal documet relatig to the evet. Registratio the represets the higher-level fuctio i which the evet is legally registered withi the CRVS IS. This ca be i the provicial or atioal-level database, 12

19 challeges, best practice ad desig priciples for moder systems electroic or paper-based, ad made ready for the compilatio of the VS. The registratio the also icludes the importat act of issuig the certificate of birth, death, marriage, etc. Commoly these three fuctios are ofte ot clearly demarcated, ad everythig is said to ivolve a registratio. Despite it beig difficult to separate the itervetios described i these three categories, we believe it is importat to do so as a certai techology may have features that led it better to certai fuctioalities tha others. For example, mobile phoes ituitively seem more suited to fuctios of otificatio tha for registratio, which could be better carried out i a electroic data warehouse. Also, techical chages will ecessarily eed to happe i cojuctio with other systems, such as legal ad goverace. For example, eve though the otificatio of the birth may take place through the mobile phoe, the issuig of the registratio certificate legally requires the physical presece of the idividual who is the subject of the vital evet. As legal systems chage much more slowly tha techical oes, the use value of techological itervetios eeds to be assessed accordigly. Table 1 briefly summarizes some examples of systems related to each of these activities, ad some correspodig examples. 13

20 Civil Registratio ad Vital Statistics 2013: Table 1. Summary of activities ad systems relatig to civil registratio systems Nature of CR activities Status of the iformatio system Examples Recordig There exist examples of real-time recordig of births, but death recordig systems are far more limited There exist systems for VA, but they are rarely liked to death registratio Agicourt Health ad Demographic Surveillace System i South Africa (13) Birth recordig i Ghaa based o a OpeMRS based system called MGV-et is used to record real-time birth iformatio i a pilot project (11) It is ofte uclear if systems are oly recordig the evet or also carryig out otificatio ad actual registratio Typically, systems are stad-aloe Various efforts are made by coutries to use ICD-10-based classificatio systems for mortality iformatio, but they suffer from weak likages with CR systems Burkia Faso, Ethiopia, the Gambia, Mozambique, Seegal ad the Uited Republic of Tazaia are all reported to have itroduced stad-aloe CR systems, ofte based o the Household Registratio System (HRS) to register births, deaths ad migratios (17) Notificatio Mobile phoes may be especially suited for low ad middle icome coutries, where a sigificat proportio of the birth ad death evets typically takes place outside the jurisdictio of the health facility Sice otificatio would ivolve legal mechaisms to be created, i their absece SMS ca be used to trigger the process of otificatio rather tha carry out registratio Likages of SMS with CR are relatively uclear, other tha possibly triggerig iformatio about the evet I Ghaa, the CR database ca be accessed, or i our terms otified ad updated by mobile phoe, which ca the allow the geeratio of the birth certificate at the commuity level Moitorig of vital evets usig iformatio techology (MOVE IT) projects i Keya ad Rwada, based o low ed phoes ad Rapid- SMS, support that the details of the evet are appropriately coded ad etered i a paper form, take the ito a form o the mobile phoe ad set by SMS to the district level which is expected to register the evet. Legal processes eed to be established whereby a SMS ca be treated as a formal otificatio, somethig typically ot curretly i place Registratio There are few examples of fully automated registratio systems Computerized registratio iitiatives are typically ot itegrated with other systems Typically, registratio iitiatives are based o a electroic data warehouse approach where iformatio is stored i oe place I Albaia, for each citize a idividual record was created i the CRVS database, also treated as a populatio registry, ad issued a Uique ID (18) The Govermet of Fiji has itroduced a webbased system that itegrates iformatio from Health, Registrar Geeral ad Statistical departmets, elimiatig duplicatio of data etry ad codig Bagladesh has itroduced the Birth Registratio Iformatio System (BRIS) o a pilot basis with the aim to record idividual birth iformatio, automatically issue birth certificates, ad t retrieve ad report birth data whe required by storig them cetrally i a electroic database (19) 14

21 challeges, best practice ad desig priciples for moder systems 2.2 Status of iformatio systems for registratio Registratio of a vital evet by defiitio is a legal act, ad ivolves typically the issuace of a certificatio of registratio of the evet. Mostly, coutries have maual systems that are historical ad may have bee ruig for more tha a hudred years. As a part of reform efforts, may of these coutries are i the process of automatig their maual systems, ad differet techologies such as spaig ad computerizatio have bee ivolved i the process of digitizatio ad archivig. Amog low ad middle icome coutries, there are arguably oly a few that have fully automated systems with capabilities of geeratig also the legal documetatio required for the completio of the act of CR. Some examples are offered i Table 2. Table 2. Examples of automated civil registratio systems Coutry Albaia Mauritius Ghaa Examples Every citize has a separate record i the populatio database cotaiig his or her birth iformatio, residetial ad civil status iformatio (18). This is based o a web-based system facilitatig the geeratio of documets. This system uses as the primary key a uique persoal ID umber. CR iformatio is shared with other govermet departmets, ad citizes may obtai birth, death ad marriage certificates ad register marriages olie Uder the e-busiess pla, the coutry has put i place a system that, i additio to registerig vital evets ad geeratig VS iformatio, produces legal documets locally by accessig the cetral database CR systems do ot appear to be equipped with the facility for geeratio of the legal documets (11). Possibly, because these are mostly pilot systems, they may ot be etrusted with this resposibility Namibia A birth certificate is provided to all babies before they leave the health facility (20), which the eables itegratio with other govermet iformatio systems. The same situatio is reported i Ugada Philippies The Natioal Statistics Office (NSO) provides the facility to obtai birth certificates olie, sice all CR documets are digitized ad available i a database. It ca be see that there are may differet models beig used by coutries to carry out the registratio of the evet, ad the techologies are varied. Further, a large majority of the evets beig registered relate to births rather tha deaths, ad COD details are most ofte difficult to fid. 15

22 Civil Registratio ad Vital Statistics 2013: 2.3 Status of iformatio systems for vital statistics While some coutries are reported to have itegrated CR ad VS systems, for example Albaia, Egypt, Mauritius, Moldova, Mogolia, South Africa ad Thailad, most coutries by ad large seem to have separate systems. Itegratio of systems ehaces the capability of geeratig vital iformatio statistics reports ad also permits the aalysis of data, such as profilig of deaths by causes ad geography. Some of these systems store idividual records for life evets, from which statistical reports ca techically be geerated to help formulate demographic ad other idicators. I Fiji, the CR system is itegrated with the Health ad Statistics departmet, makig full use of birth iformatio which is etered at the time of birth at the health facility. This robust itegratio facilitates the extractio of VS data ad each citize is idetified by the birth registratio umber issued by the Registrar Geeral s departmet at the time of birth. From the Sample Registratio System (SRS) i Idia, statistical reports ca be also geerated. Also, basic demographic idicators are beig geerated from some of the demographic surveillace systems (17). The Chiese disease surveillace poit system collects COD data based o ICD-10 codes ad geerates statistics from these records (21). I the Muicipal Corporatio of Delhi, there is a itegrated system capable of producig statistical reports related to births as well as deaths. The BRIS from Bagladesh is oly reported to have the capacity to aggregate birth iformatio. Some surveillace systems, for example the Agicourt Health ad Demographic Surveillace System (HDSS) i rural South Africa, are updated aually with residet ad vital evets, from which they are capable of geeratig statistical reports. The Ghaa system is described to be capable of geeratig VS reports for the cluster of villages where the system is operatioal (11). Various systems have bee described as beig capable of geeratig statistics from idividual data such as those i Iraq (22), Malawi ad the Uited Republic of Tazaia (10), but it is uclear whether these represet the formal VS systems of the area. Similarly, the Electroic Idoor Morbidity ad Mortality Reportig system (eimmr) of Sri Laka reports COD iformatio for deaths occurrig i hospitals. Though it does ot cotribute to the formal death registratio statistics, this system is capable of geeratig statistical reports at facility, regioal ad atioal levels regardig hospital deaths, COD ad age-specific mortality rates (12), which do ot ecessarily relate to the formal VS systems of the coutry. As ca be see from this brief overview, there are various kids of systems i coutries that deal with VS. Some of the uderlyig characteristics of these systems are that ofte such statistics are ot geerated automatically from the idividual records of births ad deaths but represet a parallel system. The systems are sometimes techically ot capable of carryig out automatic aggregatio from the idividual records to geerate VS. Furthermore there are efficiet systems, such as the oe i Sri Laka, which are capable of geeratig aggregate 16

23 challeges, best practice ad desig priciples for moder systems statistics from idividual death records but, because they are ot liked to the CR system, are ot treated as the official VS ad thus face challeges i beig scaled atioally. 2.4 Key uderlyig characteristics of existig systems The above review of the status of CRVS IS based o their three fuctioal areas, which leads to a broader discussio of some of their uderlyig characteristics. While some of these characteristics have bee discussed earlier, they are further elaborated o ad combied below. CRVS IS are historically maual records Most low ad middle icome coutries still cotiue to have primarily paper-based systems, ad it ideed is a challegig task to make the existig systems digital ad redefie practices to support the ew digital eviromet. Icorporatig ad itegratig legacy data that ru ito may years eve over a hudred with ew systems, represets both a techical ad a istitutioal challege. There are of course associated problems i ot dealig with a digital database, such as the challeges this creates i sharig data electroically across systems, or i beig able to create cosolidated statistics by drawig upo data over time ad place. Small-scale systems, typically pilots CRVS systems represet the classical scalig problem i the health-care sector of allor-othig. This implies that if all the vital evets from a catchmet populatio are ot registered, oe caot say the VS are complete ad usable by the authorities. To achieve the beefits of a fully fledged CRVS system, all births ad deaths must be properly registered, ad these data must be shared widely a eed that caot be resolved through pilots, ad thus the merits of the CRVS IS become difficult to show. However, full-scale CRVS systems coverig the whole geographical area or all the vital evets are differet to costruct, give that most projects are fuded by doors ad are pilot ad short term i ature. A door project is usually desiged to cover a small pilot area, or a small part of the overall CRVS system, say birth or death registratio or a study o COD. This the does ot led itself favourably to fullscale deploymet. Focus o recordig A majority of techical itervetios seem to be takig place at the level of where the evet occurs, mostly cocered with recordig details of the evet, ad trasmittig iformatio either through paper i the traditioal model or by SMS where there are experimetal efforts usig mobile phoes. I may cases, this trasmissio does ot serve as a formal otificatio of the evet, because that calls for additioal legal requiremets to be i place, for example the thumb impressio or the sigature of the citize beig accepted. If this optio is ot available, the details trasmitted ca at least serve as a trigger for actios leadig to otificatio ad 17

24 Civil Registratio ad Vital Statistics 2013: registratio. The other importat characteristic with the recordig systems are that they focus primarily o the birth evet. Death recordig evets are more difficult to fid, a fact which ca be attributed to the challege i determiig COD, ad the fact that staff are typically reluctat to report a death, especially of mothers ad ifats. O the other had, systems that focus o COD, such as VA, are usually ot coected with the CR systems. Use of stad-aloe systems ot a holistic approach The differet systems beig used i CRVS ted to be largely fragmeted i ature, breakig the CRVS process ito smaller bits ad ot beig able to recostitute it as a whole due to their lack of techical capability to exchage ad share iformatio. I may cases, the use of a stad-aloe system, rather tha a web-based applicatio deployed through server cliet architecture, impedes the local settig to lik up with cetral databases; the local level is thus restricted i carryig out all the CRVS fuctios icludig the issuig of legal documets. Systems that cocetrate o oe or two aspects of the overall process, as do may i Africa, make the results of computerizatio ad moderizatio rather limited ad ot so promisig. May Africa coutries are experimetig with CRVS systems that ca collect relevat details at the poit of evet ad be capable of geeratig VS reports i their catchmet areas, but they most ofte lack the capacity to geerate documets that are legally acceptable. Furthermore, sice efforts are cofied to a small geographical area ad carried out i a research mode with limited capacity ad itetio to scale up, they are ot equipped with the legal authorizatios required. This leads to a vicious cycle: because of their pilot status they caot fully impact o the CRVS system, ad without its legal capacity, they are ot able to scale up. Agai, this impedes beig able to develop a overall picture of the CRVS status. Focus o births, ot deaths As metioed earlier, processes of death registratio ad the associated VS geeratio are see to be geerally poor i low ad middle icome coutries, where much greater emphasis seems to be give to moderizig birth-related systems. This is probably because birth registratios are relatively trouble free, while death records are ofte ot completed ad COD iformatio is otoriously difficult to fill. The problem is further magified whe deaths take place outside the health facility, i the commuity or at home. There are limited examples of atioal systems that are itegrated with death-related data comig from various sources such as hospitals, fueral homes or burial grouds. I additio to the challege of coverage of data, death data also suffer i terms of quality because of the challeges i accurately determiig COD, which is ofte left blak or completed as other. Proprietary techical platforms Most of the examples of CRVS systems reported i the literature are built o proprietary or o-ope source platforms, for example i Albaia. A cosequece of this is that data sharig across such platforms is a o-trivial challege because of costraits i accessig the code or the database structure by the agecies ivolved. The use of proprietary platforms 18

25 challeges, best practice ad desig priciples for moder systems teds to create vedor lock-is, where it becomes difficult to create ay chages to the code without cotract-based itervetios from the vedor. The problem of data sharig is further magified i the absece of the use of ope stadards i the CRVS domais. Or eve worse, i the absece of stadards themselves, sharig of data is problematic. Give the multisectoral ature of CRVS systems, the absece of easy ad free mechaisms of data sharig across systems makes it extremely difficult to have effective ad well-fuctioig systems. Lack of architecture focus Overall, there is a absece of a architecture approach i which, by desig, the various systems that costitute parts of the overall CRVS are see to exchage iformatio. These limitatios arise from both techical ad istitutioal coditios. Techical challeges arise from reasos of the use of proprietary platforms or systems ot desiged for iteroperability, ad the use of stad-aloe rather tha web-based platforms, which makes it complex for multiple systems to speak to each other. The lack of data-sharig stadards also provides other techical costraits. Istitutioally, there are various challeges for the systems to commuicate, the biggest oes beig that systems are owed by differet miistries ad are thus guided by differet orms ad sets of practices. For example, while the HIS come uder the purview of the Miistry of Health, the CRVS IS is the resposibility of the Miistry of Justice. As a cosequece of differet istitutioal owerships, problems arise because of the absece of shared vocabularies by which the respective systems are able to recogize each other s data, ad eve more challegig is the absece of a political will to share. I summary, the challeges to CRVS ca coceptually be uderstood at three itercoected layers. The first is at the political or istitutioal level reflectig the weak uderstadig ad agreemets betwee the differet stakeholders (for example, the Miistry of Health ad the Miistry of Justice) to share data ad to have commo stadards. Furthermore, these differet etities act oly o their respective fuctios, ad ofte do ot value itegrated iformatio comig from differet fuctios. The secod is at the level of the busiess logic or the sematic level cocerig the aligmet of the purposes of why the systems should share data. For example, if both the health ad justice departmets are collectig data o evets of deaths, they should share also the commo busiess goal that the recordig of these evets should lead to the evets beig registered with the CRVS system accordig to the legal requiremets of the coutry, resultig i the issuace of a death certificate from a commo database of vital evets. For this to take place, at the third, techical level, there must exist iteroperability or to have sytactic iteroperability by which data could be shared with each other. A importat poit to ote is that these three levels are itercoected, ad without agreemets o ay of the three levels the system caot operate i totality. This three level itercoected model is represeted i Figure 1, which the becomes also a ormative ideal to strive for i the process of reformig CRVS systems. 19