E-standards for Cancer Registries - National Committee on Vital and ...

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E-standards for Cancer Registries - National Committee on Vital and ...

Brief History of ong>Cancerong> Standards -ong>Nationalong>• NAACCR founded to support new stateregistries• Data ong>standardsong> committee ong>forong>med.– Major task: resolve differences between NCI’sSEER and the College of Surgeons• Data exchange committee ong>forong>med to agreeon single common ong>forong>mat ong>forong> all cancerreports.

Status of Caliong>forong>nia Standards• Now used by 450 hospitals reporting to state• Caliong>forong>nia Standards include:– A mandated ASCII layout used by all vendors– ong>Nationalong>ly-agreed-upon code sets + Caliong>forong>niaextensions– Online coding manuals with context-specific help– A common edit set to enong>forong>ce validation andcompleteness rules

Caliong>forong>nia E-CasefindingStandards• Implementing electronic casefinding is astrong focus in Caliong>forong>nia• The volume of potential case reports drivesan electronic solution• Many more potential cases must be scannedthan end of as reportable cases• Several Automated casefinding projectdiscussed below

Apparent Source of Casefinding ong>forong>Caliong>forong>nia Cases Diagnosed in 1999SourceHospital PathologyHospital-Initiated NOSHospital Disease IndexPrivate path labHospital RadiationDeath CertificateHospital Daily DischargePath consultantPhysician InitiatedOther sourceCount69,73438,09914,3456,2774,1882,7462,0301,9915531,119Percent49.4%27.0%10.2%4.4%3.0%1.9%1.4%1.4%0.4%0.8%Total141,082100.0%

ong>Nationalong> Standards Within ong>Cancerong>Surveillance – a Success• Host ong>standardsong> organization (NAACCR)• Scope is entire US and Canada• Key participation by ACoS and SEER, CDC,vendors, and states• Data harmonization between partners• Distributable dictionaries, e-manuals, and edits• States are rated ong>forong> on their ability to meet dataong>standardsong> and quality

Harmonization Achieved because• Recognition that data providers reported todisparate parties• ong>Nationalong> organizations committed tocommon definitions• Federal funding of states contingent onong>standardsong> use.

Ingredients ong>forong> Success:• A commitment to ong>standardsong>• The tools to encourage them• The courage to measure and reportcompliance.

The Edits Tool• Creates Distributable Edits• Can be integrated into any Windows app• Supports a cross-organizational metafile• Created by CDC with vendor participation• In Caliong>forong>nia, same edits are in CNExT PCfront end and Eureka, the statewide system

Problems• Little connectivity between registries anddata systems• In spite of success pilots of several HL7implementations, they are not being usedmuch

Some current projects and what wecan learn from them1. HL7-based cancer case reporting2. Integrating In-hospital HL7 messaginginto cancer reporting3. Electronic Pathology Reporting using HL74. Reporting Pathology Protocols using HL7

1. HL7-based cancer casereporting– CDC-funded to completely map a cancer reportto an HL7 ORU– Used LOINC to identify new fields– Caliong>forong>nia pilot implementation was technicallysuccessful– But no real incentives to use it ong>forong> cancerreporting.

2. Integrating In-hospital HL7messaging into cancerreporting• Creating software to capture discharge messages– Select those coded with possible cancer diagnoses– Bring them into the cancer registry– For pre-populating a case report

In-hospital HL7 messaging• Using both discharge messages and pathologymessages will be even better– Eliminates manual casefinding– Allows rapid identification of cases ong>forong> special studies• Most hospitals send standard HL7 dischargemessages

3. Electronic Pathology Reportingusing HL7– Big efong>forong>t in Caliong>forong>nia, especially withstandalone path labs– Using NAACCR HL7 message created withCDC support 2 years ago– Using a national standard list of phrases ong>forong> textsearch identification of potential cases– These ong>standardsong> have been a big help, but thereare problems

Electronic Pathology ReportingIssues– Schemes that depend on new HL7 ong>forong>matsdon’t work on outdated platong>forong>ms– Takes a long time to get lab buy-in– HIPAA confusion has labs worried aboutsecurity sending messages– No agreement yet on secure protocols that workin mixed B2B and public health environments

4. Reporting Pathology Protocolsusing HL7– Builds on CAP new pathology checklists ong>forong>cancer reports– We are implementing pilot• HL7 messaging of structured synotpic checklists• Colorectal cancers• Piloted at UC Irvine– Proposed new report ong>forong>mats must beimplemented in real messages beong>forong>e theirdesign is complete

RPP Project recipe ong>forong> success isparticipation by:– ong>Nationalong> ong>standardsong>-setters (CAP and CDC)– Standards agencies (SNOMED, HL7, LOINC)– State registries (Caliong>forong>nia and Ohio)– software developers (C/NET, Rocky Mountain,and Co-Path)– Practitioners (pathologists)

Standard Interfaces still needed• Clinical Lab Electronic-reports• Hospital Discharges• Hospital Inong>forong>mation Systems• Radiation Treatment Center systems• State Vital Status Records• Clinical Trials Systems• Rapid Casefinding systems ong>forong> Interview Studies

To make progress:• Public health and clinical groups need– To value connectivity.– To have the courage to measure compliance.• More pilot ‘glue’ projects are needed– to create structured standard interfaces– and prove their worth.

To make progress, continued:• These pilot projects need to be funded wellenough to include representatives from all the keyplayers• Proposed coding and message structures must beimplemented in real messages and environmentsbeong>forong>e their design is complete.• Standards work best when accompanied byportable edits and other tools to implement them.

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