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From page 164... ...
Whi e there are challenges to creating an integrated data sys164
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From page 165... ...
, vita records (e.g., birth, death, marriage, and divorce records) , immunization registries, newborn metabolic screening resu ts, program encounter data, resu ts of school readiness assessments, reports of childhood abuse, and hea th data for children m foster care.
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From page 166... ...
Standardizing data deEmitions and collection methods is an important step m improving the va ue of data elements, datasets, and data systems and has been a priority of the Nationa Center for Hea th Stahshcs (NCHS)
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From page 167... ...
There is increasing interest in linked datasets given the expanded ana yses they enable, but for some jurisdictions the expense, privacy obstac es, or other implementation issues make this an unreasonable short-term objective. Aggregated Data Systems The oldest and easiest method is to aggregate data from multiple datasets of counted events, problems, or traits for a popu alien group defined by residence in a geographic area or some other factor.
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From page 168... ...
, but many states and severa large cities have gone beyond mandated requirements to improve their hea th assessment and planning capabilities for children. Making Pubbc Health Data Available on the Internet There is wide variation among states and communities on the number of datasets they aggregate and the accessibility of this information to communities and the public.
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From page 169... ...
This data system contains aggregated, geographically coded data on children from hea th, education, socia services, juvenile justice, and law enforcement agencies at the county, city, and state levels. However, Los Ange es goes bqond mtegratmg the existmg admmistrative
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From page 170... ...
The data come from multiple state agencies as well as some sources externa to government. Data include expanded Behaviora Risk Factor Survei lance System data on chi dren and families that can be aggregated at various substate leve s.
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From page 171... ...
DEVEEOPING STATE AND EOCAE DATA SYSTEMS 171 eox 6-1 Community Report Cards on Children's Health Local sflorbi to monitor and track ths health and wsil-bsing o/ childrsn through community rsport cards dsmonstrats a vital intsrsst on behal/ o/ communitiss to understand how childrsn ars /aring Mors importantly, thess rsport cards—also rs/srrsd to as "scors cards,'"prof Iss,'or "data bookr.'—help communitiss dsvelop strategic pnoritiss /or action that can improvs childrsn's health Tho dovolopmont o/ community roport cards is olton inibatod by local hoalth doparlmentri local government agenciss colleges and universitiss nonpro/it organizations, ar d /oundations Theysomstimes involvs community rer;idents and staksholderr., requirs a signdicant investment o/ t ms and rssourcss, and havs a rangs o/targst audisncss, including policy makers, pro/sssionals, media, and community groups Community rsportcards notonlytrack health conditions, but also /ocus on broader indicators o/ child hoalth and itr. influsncss, including social and smot onal wsilbsing, sa/sty and cnms, sducation and work/ores rsadinsss, and sconomic wsilbsing Soms rsport cards disaggregats their data by geographic arer~, sthnic groups, or sociosconomic status track data over tims and oflsr policy and programmatic rscommendations An saampis is ths Los Angelss Childrsn's ScorsCard, dsveloped and publishad by ths Los Angelss County Childrsn's Planning Council, a public-privats partnsmhip organizaton crsated bycounty govemment Ths ScorsCard tracks a ssto/indicatom across f vs outcomes o/ child wsil-bsing—good health social and smotional wsil-bsing, sa/sty and survival, sconomic wsil-bsing, and sducation/work/orcs rsadinsss Ths indicators to bs collected ars dstsrminsd by key staksholdsm, ineluding community rsprsssntatives tracked over 9ms and disaggregated by ths oight regions o/ ths county Ths rsport also capturss how communibas ars translabng ths data into action, by highlighting ths work o/ nins regional childrsn's councils whoss sflorts ars alignsd with ths fvs outcomes and indicators that ars o/ most concam to that region Los Angelss County hr~ used ths ScorsCard to guids community achon on childron's health issuss Concernsd that only 75 psrcent o/ childrsn had health insuranco, in 1997 ths county—in part smhip with ths community—sstablishad r~ a goal snrol lin g 1 00,000 mors chil drsn into Msdi Cal By ths snd o/ that year, 124,000 childrsn had basn snrolled By 1999, ths numbsr o/ childrsn with health insurancs increr~sd ho BO psucent Ths numbsrs o/childrsn immunized also incrsased by 15 psrcent bstwssn 1997 and 1999 Ths ScorsCard is publishad svery 2 yeam and is ths primary sourcs o/ data on childrsn's health and wsil-bsing in Los Angelss County
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From page 172... ...
The disadvantage of linking datasets is that more concerns are raised about confidentia ity and privacy, discussed later in this chapter. A Innked data system must adhere to state and federa ru es and regu ahons regardung the collection and dissemination of confidentia datai the Hea th Insur
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From page 173... ...
The hrst phase aggregated datasets across five state-level departments serving children. The second phase linked the datasets with individua identifiers to allow case managers in the various state departments to access information on the Internet for their c ients.' In itia Iy the information provided by each program was limited.
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From page 174... ...
The technology available today Can produce linked data systems. The challenges stem from a lack of awareness about the poLenLia ben
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From page 175... ...
S Depnrtmenl of Hsalth and Human Services Russ amodsl effort Dnving population-br~sd quality improvement activibas using shared data will soon tosttho compistensss and accuracy of the immunkaLon data in KIDSNET A third use of KIDSNET is system performance evaluation Under the stats health departments nut onty Russ the Titis V agency for Rhode island, indicators of a medical home are b sing delve loped to red set the valu as of continuity, comprs hensivsnoss, and coordinated cars Using linked data at the individual child level, these indicators will be used by a multidisciplinary team to develop quality improvement activities that will attempt to art urn a medical home for all preschool children in Rhods island
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From page 176... ...
In the case of children, this inc udes birth defects (on some jurisdictions) , newborn metabolic screening, newborn hearing screening (in some jurisdictions)
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From page 177... ...
Since federa and state laws vary according to the data elements and datasets mvolved, genera statements cannot be made to fit a I federa and nationa efforts to develop systems of data. However, some overriding issues must be addressed at the federa level before states can move forward.
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From page 178... ...
Parents must a so be assured that no neganve action will occur if they refuse consent. Consent forms can be designed tn have a list of data elements that can be shared and those that are not to be released.
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From page 179... ...
Advisory groups can decide which data elements should be exc uded in the data system, or shou d be accessible only after the identifiers have been removed, or shou d be shared only after a unique identifier has been assigned. This same advisory committee cou d a so deve op protocols on what data could be available to researchers or other groups and under what conditions.
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From page 180... ...
Extensive security protocols in place for public hea th bioterrorism systems a so provide possible mode s. The Census Bureau has implemented m approach that makes sensitive mdividua -leve data avai able to researchers in seven data centers across the country (see Box 6-5)
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From page 181... ...
Ang ems, Cal ifornin: rind Pitt burgh, Psnnsylvani a. Access to the data is strictly limited to researchers and stall Authorized by the Census Bureau The computers in the RDCs are not linked to the outside world.
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From page 182... ...
Stamdarddzation of Data Elements Standardizing data elements and the methodology for their collection is vita to having reliable ana yses. Various agencies of the federa government have taken the lead in this area, md there is good rations e for strengthening the coordmation and collaboration of all the federa agencies providmg funds and guidelines for the many programs that require collection of administrative data on children's hea th or hea th influences.
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From page 183... ...
. Standardized data on school readiness and performance in grades 4 and 8 cou d advance efforts to identify practices most effective in helping children perform at the same level of their peers even though they are behind when they start kindergarten (see Box 6-6 for an approach in Vancouver using school readiness data)
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From page 184... ...
In addition, data system developers must grapple with datasets that sometimes contain incomplete and maccurate data. St mdardization of data elements will he p to reduce inaccuracies.
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From page 185... ...
Most data now are geographically coded at the state and county level, and some public hea th data, such as cancer data, me udes geocodes. However, few communities have data other than decennia census data available at smaller geographic levels, such as the census tract level.
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From page 186... ...
Created in partnership with the Association of Materna and Chi d Hea th Programs, all states receiving federa materna and chi d hea th block grant dollars are required tn collect and submit certam data elements that are used to create pro
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From page 187... ...
CDC has a so developed the Nationa E ectronic Disease Su veillance System ( ~ E DSS ) , origins Iy pi oted m Nebraska and Tennessee, which establishes standardized data elements and c m link with state systems to use state data to get nations tom s for specific indicators.
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From page 188... ...
These proposa s have concentrated on designing a nationa information infrastructure for hea th services and if implemented should erplicitdy inc ude child hea th measures as a core component of the infrastructure. The MCHB and CDC have funded snme states to develop integrated child trackmg systems that combine datasets, such as vita statistics data on births, newborn screenmg, and early childhood programs.
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From page 189... ...
This could involve increasmg the sample size to obtain data va id for a sma ler geographic unit or adding new questions to an existing su vq, as some communities do now using the Behavior Risk Factor Survey or the Youth Risk Behavior Survq. State-leve aggregated data that are avai able to the public on the Internet will
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From page 190... ...
indicators · havs snduring importancs to child hoalth and woll-boing in Maino · havs implica90ns for policy or acton · ars outcoms orisnted not just procsss mer~urss · ars relevant to policy makers, stats agency managers, community Isaders, citkens, and youth · aro roadily and uniformly understandabis and msaningful · aro goal-drivon, i o, 'What should ws bs tracking2' not 'What can ws sr~ily track7' · ars consistent with sxisting mer~ursment and rsport ng stan dards trom oths r sourcss · ars rsprsssntaLvs of ths larger popula90n, not just ons group · havs a consistent data sourcs, ons in which ths indicator wr~ mer~ursd in ths sams way over mulLpis obssrva90ns · refact a balancs bstwssn tadi90nal and promo90nal indicators Thers ars thrss typas of indicators dsveloped by ths Mains Marks initiativrs · ths fully dsveloped indicators (numbsr = 40) with at Isr~t thrss years of histoncal data · tho pardally dovolopod indicators (numbor = 2B)
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From page 191... ...
In collaboration with the federa MCHB, states are a so working to improve state data capacity. The state materna and child hea th of lice may be a logica locus for leadership on state data systemsi at a minimum, state efforts should attempt to but d on this existing capacity.
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