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Making really good sausage Evolving standards in public health case reporting

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Making really good sausage. Evolving standards in public health case reporting. Session plan. Harmonizing Content of Public Health Surveillance Systems: Lessons Learned from the ONC Standards and Interoperability (S&I) Public Health Reporting Initiative (PHRI) - PowerPoint PPT Presentation

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Page 1: Making really good sausage

Making really good sausage

Evolving standards in public health case reporting

Page 2: Making really good sausage

Progress towards RCKMS CSTE 2013 Annual Meeting

2

Session plan• Harmonizing Content of Public Health Surveillance Systems:

Lessons Learned from the ONC Standards and Interoperability (S&I) Public Health Reporting Initiative (PHRI)

• Progress Toward a Reportable Conditions Knowledge Management System (RCKMS)

• Electronic Reporting of Communicable Diseases: Demonstrating the Utility of a Constrained Public Health Case Report in HL7 Clinical Document Architecture (CDA)

6/11/2013

WITHDRAWN

WITHDRAWN

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Progress Toward a Reportable Conditions

Knowledge Management System (RCKMS)

Rita Altamore - Washington State Department of HealthLaura Conn - Centers for Disease Control and Prevention

Catherine Staes - University of UtahShu McGarvey – Northrup Grumman / CDC

CSTE 2013 Annual Meeting

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Progress towards RCKMS CSTE 2013 Annual Meeting

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Where we were this time last year

• CSTE-CDC ELR Taskforce Standards Workgroup– RCMT a start– Need more

• Funded RCKMS project had just started – May 2012

be careful what you wish for…

6/11/2013

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RCKMS Objectives (1)• Serve as a current, authoritative source of information about

what is reportable to each U.S. jurisdiction, for use by public health reporters (e.g., clinicians, laboratories, hospitals).

• Support the Meaningful Use population health objective of Reportable Laboratory Results by supporting reporting by Eligible Hospitals (EPs).

• Decrease the time and effort invested by public health reporters as they strive to comply with ever-changing reporting requirements.

• Improve timeliness and completeness of public health reporting.

• Serve as a resource for automated case detection and case reporting systems.

6/11/2013

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RCKMS Objectives (2)• Tie together the interoperability standards needed to enable

electronic reporting (e.g., terminology, messaging, document, services, transport).

• Support major national initiatives such as the revised International Health Regulations, Homeland Security Presidential Directive 21, the Pandemic and All-Hazards Preparedness Act, and the Health Information Technology for Economic and Clinical Health (HITECH) Act, enacted as part of the American Recovery and Reinvestment (ARRA) Act of 2009.

• Make explicit the variation in reporting requirements that now exists, enabling review by stakeholders with the goal of reducing variation determined to be unnecessary.

6/11/2013

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What’s happened since then

• Implementation of first phase of RCKMS– Initially funded through 1/2013– Additional funding extends work through 6/2013

• Steering committee, working groups• Stakeholder representation– PH organizations (CDC, CSTE, NACCHO, APHL)– Epidemiologists, laboratorians, informaticists– Vendors, healthcare provider organizations

6/11/2013

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RCKMS Steering Committee• Co-leads

– Rita Altamore-Washington State DOH

– Laura Conn-CDC/PHSIPO• Members

– Shandy Dearth-Marion County HD/NACCHO

– Karen Eilbeck-University of Utah

– Shaun Grannis-Regenstrief Institute

– Janet Hamilton - Florida DOH /CSTE

– Leslie Ann Helmus-Virginia DOH

– Ruth Ann Jajosky-CDC/PHSIPO

– Riki Merrick-iConnect Consulting/APHL

– Ninad Mishra-CDC/PHITPO– Catherine Staes-University of

Utah• CDC Project Sponsors

– Bob Pinner-CDC/NCEZID– Kathy Gallagher-CDC/PHSIPO

6/11/2013

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RCKMS Subgroup Structure

• Representation from the very diverse set of stakeholder groups– Members provide expertise and review and approve deliverables

• Requirements– Sunanda McGarvey / Julie Lipstein

• Jurisdictional Validation for Pilot Content– Catherine Staes / Rita Altamore

• Healthcare/ Vendor Partner Validation for Pilot– Brian Labus / Shu McGarvey

• Knowledge Representation– Karen Eilbeck/ Catherine Staes; facilitator - Sundak Ganesan

• Governance– Rita Altamore / Laura Conn

6/11/2013

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Progress towards RCKMS CSTE 2013 Annual Meeting

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RCKMS Pilot Project

• Discussions at CSTE 2012– Question: can PH be ready for case reporting in MU

Stage 3?– Answer: yes, if we collectively commit to making it so

• Demonstrate capability– Pilot project– Information PH clinical setting

• Clinical setting PH pilot project already underway• PHDSC Clinical Document Architecture (CDA) for Public

Health

6/11/2013

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RCKMS pilot: reportable conditions

• Pertussis– Part of CDA for PH pilot project

• Tuberculosis– Part of CDA for PH pilot project

• Blood lead level– Non-infectious condition– Reportable throughout the US– Known variation in reporting requirements

6/11/2013

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RCKMS pilot: jurisdictions

• Colorado• Delaware– CDA for PH pilot project participant (pertussis)

• New York City• New York State– CDA for PH pilot project participant (pertussis)

• San Diego County (pertussis only)

– CDA for PH pilot project participant (pertussis)• Utah• Washington State

6/11/2013

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Information gathered (1)

• Information about the reportable event, including: – Condition name – Location to which the specifications apply (e.g., Utah,

New York City)– Types of reporters for whom the information is relevant

(health care provider, hospital, laboratory). • Other types of reporters exist, scope of pilot limited to these

– Contact information about the public health entity that• authored the content• authenticated the content• is responsible for the rules reflected by the content

6/11/2013

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Information gathered (2)

• Reporting logic: when to generate a case report or laboratory report – Widely varying types of criteria, including: patient

age, pregnancy status, diagnoses/problems, laboratory test orders/results, treatments, epidemiologic information

– Basis for reporting: • Location of the person’s residence• Location where clinical care was delivered• Location of the laboratory.

6/11/2013

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Information gathered (3)

• Reporting actions– Reporting time frame (e.g., immediately, two

business days, monthly)– For each type of reporter:• Required reporting method

~ OR ~• When more than one method is available, which one is

(or which ones are) preferred– Specimen submission requirements

6/11/2013

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Information gathered (4)

• Methods for PH to receive a report– Phone and fax numbers– URLs for reporting forms– Contact information to set up ELR

• Links to additional information– Jurisdictional reporting laws and rules– CSTE position statements– Clinical and other guidance

6/11/2013

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Phase 1: out of scope

• Information to guide a clinician in determining a patient’s diagnosis

• Information to support public health epidemiologists in case classification (e.g., suspect, probable, confirmed)

6/11/2013

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Accomplishments

• Data collection and persistence• Web site development• Standardized output– Human readable– Machine processable

• Evaluation by a diverse set of users– Vendor engagement

• Subscriptions/notifications

6/11/2013

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Testing scenario #1• You are a laboratory located in Utah and have a positive

result for TB, which you believe needs to be reported to public health.

• Your lab has not yet implemented ELR.• You would like to determine how quickly the report needs to

be sent, to whom it should be sent and the methods of reporting that are available.

• Since you don’t do ELR, you also need ready access to the report form to fill out.

• Finally, you’d like to review the list of lab criteria that Utah has specified as sufficient for reporting.

6/11/2013

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Testing scenario #2

• You are a healthcare provider in Utah and have a patient with night sweats and positive tuberculin skin test. You suspect TB, but are not sure if it should be reported to public health.

• You’d like to review Utah’s reporting criteria for Suspect TB to determine if a report should be sent.

6/11/2013

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Testing scenario #3

• You are pediatrician in Delaware and have just seen an 18 month old female with a cough, and inspiratory whoop. You believe the symptoms are suggestive of pertussis and would like to know if this should be reported.

6/11/2013

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Testing scenario #4• You are a laboratory located in Denver and have lab

results showing blood lead concentration of 18 ug/dl in a 15 year old adolescent. The patient was a resident of Utah and was seen in Utah, but the laboratory testing was done in Denver.

• You would like to know if this is reportable to public health. If it is reportable, you’d like to know how quickly it should be reported, what should be included in the report, and if the report can be faxed.

• You’d also like to know if it should be sent to the state, or the local health department.

6/11/2013

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RCKMS pilot application – criteria set 1

6/11/2013

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RCKMS pilot application – criteria set 2

6/11/2013

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RCKMS pilot application – test value set

6/11/2013

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RCKMS pilot application – links and references

6/11/2013

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Challenges

• Collecting the information– Case reporting -- not case classification / case

notification• Representing the information in data structures– Complexity– Criteria statements not designed for computing– Variation

• Representing the information for human readers• Representing the information for EHRs

6/11/2013

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Variation

• Session at CSTE 2012– Variation in reporting requirements: how bad is the

problem / what are the opportunities for prevention and treatment?

– Well attended, good discussion– Bottom line: • Collective yawn

• RCKMS staff team got migraines– Even with only 7 pilot jurisdictions, huge variation

6/11/2013

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VariationRelevant Jurisdiction

Blood lead level

Patient’s Age Reporting timeframe

Utah ≥10mg/dL Any 60 days

< 10mg/dL Any No action – not reportable

Colorado

≥10mg/dL ≤18 years 7 working days< 10mg/dL ≤ 18 years 30 days≥ 25mg/dL > 18 years 30 days

< 25mg/dL > 18 years No action – not reportable

Washington

≥ 10mg/dL ≤15 years 2 working days< 10mg/dL ≤ 15 years 1 month≥25mg/dL Any 2 working days< 25mg/dL > 15 years 1 month

6/11/2013

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Problematic criterion statements

At least one of the following: prolonged productive cough, night sweats, fever, weight loss, or [other Not otherwise specified clinical abnormality- such as wound that won't heal or enlarged pericardium, etc] AND other diagnoses have already been ruled out. Abnormal chest radiograph showing clinical manifestations described in the Red Book for findings suggestive of TB, in the absence of another diagnosis.

• High complexity, even for human reader• Hard (impossible?) to render in computable form

6/11/2013

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CSTE position statement - pertussisReport any illness to public health authorities that meets any of

the following criteria: 1. An acute cough illness of any duration with an inspiratory whoop 2. Any person with isolation of Bordetella pertussis from a clinical

specimen or a positive PCR test for B. pertussis 3. Any cough illness greater than 2 weeks duration in a person who is

a contact of a laboratory-confirmed pertussis case. 4. Any cough illness greater than 2 weeks duration in a person who is

a member of a defined risk group during an outbreak. 5. A person whose healthcare record contains a diagnosis of pertussis. 6. A person whose death certificate lists pertussis as a cause of death

or a significant condition contributing to death.

6/11/2013

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CSTE Table VI-B for pertussisCriterion ReportingClinical Evidence

Cough (any duration) NCough > 2 weeks duration NInspiratory whoop NHealthcare record contains a diagnosis of pertussis

S

Death certificate lists pertussis as a cause of death or a significant condition contributing to death

S

Laboratory EvidenceIsolation of Bordetella pertussis from a clinical specimen

S

Positive PCR for B. pertussis SEpidemiologic Evidence

Contact with a laboratory-confirmed pertussis case

O

Member of a defined risk group during an outbreak

O

S = This criterion alone is Sufficient to identify a case for reporting. N = All ”N” criteria in the same column are Necessary to identify a case for reporting. O = At least one of these “O” (Optional) criteria in each category (i.e., clinical evidence and laboratory evidence) in the same column—in conjunction with all “N” criteria in the same column—is required to identify a case for reporting. (These optional criteria are alternatives, which means that a single column will have either no O criteria or multiple O criteria; no column should have only one O.)

6/11/2013

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Drawing the line

• What makes a logic set a logic set?• How do you name logic sets?– Meaningful to users– Accurate and unambiguous– Not too long

• Reporting logic on one page, actions on another? – Reporting logic inextricably linked to reporting

action

X6/11/2013

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Detailed diagnostic criteriavs. simple triggers

At least one of the following: prolonged productive cough, night sweats, fever, weight loss, or [other Not otherwise specified clinical abnormality- such as wound that won't heal or enlarged pericardium, etc] AND other diagnoses have already been ruled out.

Cases or suspected cases of tuberculosis

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Expression of lab results

• Lab test categories must be meaningful to public health rule authors– Not as granular as LOINC, but mappable

• Pertussis example – Isolation of Bordetella pertussis from a clinical specimen – Positive PCR for B. pertussis – IgM positive serology for B. pertussis – IgA positive serology for B. pertussis – DFA positive for B. pertussis

6/11/2013

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Expression of lab results

• What’s in the test and what’s in the result– Organism specific culture --- “Positive”• Bordetella pertussis [Presence] in Nasopharynx by

Organism specific culture -- Positive– Non-organism specific culture --- Organism

identified• Bacteria identified in Nasopharynx by Culture ---

Bordetella pertussis

6/11/2013

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Sending info to EHRs

• Public health reporting is a clinical decision support problem

(…when not fully automated)• A variety of PHCR interaction patterns exist,

including:– Create report and send (fully automated)– Create report and present for clinician approval– Create report and present additional questions

• ONC S&I Framework Structured Data Capture Initiative (SDC)

6/11/2013

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Providing machine-processable information to EHRs

• September 2012: no clear “best standard”• Formal assessment by Lantana Consulting Group

– Maturity, adoptability (HITSC) – Applicability, testability

• Reviewed 4 candidate standards– HL7 Health Quality Measures Format (HQMF) – HL7 Arden Syntax– HL7 Decision Support Service (DSS) – HL7 Infobutton

• “Based on the suitability analysis, we conclude that the HL7 Health Quality Measures Format (HQMF) standard best meets the specification requirements defined by the RCKMS project.”

6/11/2013

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HQMF for pertussis in SD

• Informaticists from the Public Health Data Standards Consortium (PHDSC) developed HQMF files – Pertussis reporting specifications from Colorado and San

Diego county • Easy – Authors– Clinical concepts– Simple conditional logic– Reporting methods– Links

6/11/2013

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HQMF for pertussis in SD

• Difficult – Public health concepts

• Vocabulary for types of reporters• Timeframe for reporting

– Required reporting period specified in rule but….reporters should still report even If outside timeframe

• Structured representation of age– Value sets that contain codes from different coding

systems (e.g., diagnoses/problems in SNOMED or ICD-10-CM)

– Complex conditional logic

6/11/2013

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Healthy Decisions (HeD)

• ONC S&I Framework Initiativehttp://wiki.siframework.org/Health+eDecisions+Homepage

• Scope: To identify, define and harmonize standards that facilitate the emergence of systems and services whereby shareable CDS interventions can be implemented via:– Standards to structure medical knowledge in a shareable

and executable format for use in CDS, and– Standards that define how a system can interact with and

utilize an electronic interface that provides helpful, actionable clinical guidance

6/11/2013

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HeD HL7 IG

• HL7 Implementation Guide: Clinical Decision Support Knowledge Artifact Implementation Guide, Release 1– HL7 DSTU Ballot – January 2013

• Review and disposition of comments completed

• Standard to be used in pilots

6/11/2013

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RCKMS and HeD

• Have formally committed to pilot project• EHR partner being identified, in partnership

with HeD• Starting with San Diego pertussis• Aziz Boxwala (HeD SME) converting RCKMS

information into HeD format– Some challenges persist

6/11/2013

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Specifying the PH report

• CDA for PHCR – balloted by HL7 2009• Extended and updated in PHDSC pilot project• Standards & Interoperability (S&I) Framework

Public Health Reporting Initiative (PHRI)– Guide to Constrain the CDA R2 Specification to

support PH Reporting with two Examples of Document Level Constraints (Communicable Disease and Adverse Events) 4/24/2013

6/11/2013

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Knowledge Representation Subgroup

Co-Leads: Karen Eilbeck and Catherine Staes -- University of UtahFacilitator: Sundak Ganesan – CDCMembers:• Anna Orlova – John Hopkins

School of PH• Arun Srinivasan - CDC• Austin Kreisler - CDC• Cecil Lynch – Accenture

• Cindy Vinion - Northrup Grumman

• Jeff Kriseman - CDC• Jerry Sable – The St. Johns Group• Julie Lipstein – L3 STRATIS• Nikolay Lipskiy - CDC• Scott Keller – Northrup Grumman• Senthil Nachimuthu – 3M Health

Information Systems• Sheila Abner - CDC• Sunanda (Shu) McGarvey –

Northrup Grumman

6/11/2013

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KR Subgroup Objectives• Determine which use cases would benefit from a formal

knowledge representation• Identify the domains of knowledge required by RCKMS to

fulfill the use cases– Classify where data is hierarchical or has complex relationships (e.g.,

jurisdictions, reportable conditions [events])– Identify existing knowledge representations that may be used by

RCKMS– Describe knowledge internal to the reporting domain

• Analyze benefits of a formal representation and RCKMS functionality

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RCKMS boundaries

• Public health domain-specific knowledge– Reportable

conditions– Reporting criteria– Reporting actions– Jurisdictional

rules

• Other knowledge– Diseases/health conditions

• Manifestations• Diagnostic criteria• Taxonomy• Etiology• Treatment

– Anatomy– Microorganism taxonomy

RCKMS not-RCKMS6/11/2013

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Ontological conundra

• Diagram and describe relationships among these:Dengue hemorrhagic feverDengue feverArboviral diseaseViral hemorrhagic feverDengue shock syndrome

• Varying levels of granularity – SRCA bane – “implicitly reportable”

• Condition and organism names evolve– Novel coronavirus –> MERS CoV

6/11/2013

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Next steps

• Secure funding to continue work• Demo existing products to stakeholder

organizations• Continue pilot with HeD• Build and test authoring framework• Work with public health partners to build a

national governance structure• Develop plan for capturing information or all

jurisdictions

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Authoring framework• Authorized users in public health jurisdictions require an

authoring framework to specify:– The conditions that are reportable to them and how quickly they

should be reported.– The criteria (e.g., lab, clinical, epidemiological) to be assessed in

determining if the report qualifies to be sent to public health.– Where the report should be sent within the jurisdiction and the

contact information for the receiving public health agency.– A statement of the actual regulatory or legal requirement for

reporting and links to regulatory documents and other information related to reporting.

– The information to be included in a report, and the format to use, including standards.

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Authoring requirements

• Collaborative workflow management– Reporting requirements lifecycle

• Unambiguous representation of attribution and ownership for jurisdictional data– “Chain of custody”

• NEDSS snapshots– What was reportable where and when

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Bottom line

• RCKMS is making good progress Lots of hard work remains• Participation of many talented

folks is wonderful• Total immersion in national

standards efforts is heartening• Consignment of PHCR to Meaningful Use’s

“future” is discouraging

6/11/2013

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Acknowledgements

• Too many to mention…• Steering committee and subgroups• Laura Conn• My co-authors: Laura, Catherine, Shu• Above all…the fabulous team of project

managers, analysts and developers who have made RCKMS happen….

6/11/2013

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The core team

• Brandon Mitchell • Catherine Staes • Cindy Vinion • Duane Jones • Eddie Reyes • Gidado Immanuel• Julie Lipstein

• Karen Chung • Kimberly Carson • Randheer Gehlot • Scott Keller • Shu McGarvey • Tariq Ali

THANK YOU!6/11/2013

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Questions?

(…and thank you all!)