Maximizing Electronic Health Records (EHRs) for Public Health Reporting

2019 HIMSS Interoperability Showcase

February 2019

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Table of Contents

Introduction …………………………………………..……………………………….2

National Center for Health Statistics (NCHS)……..……………………………….. 3

National Program of Cancer Registries…..…….………………………………….....7

Center for Surveillance, Epidemiology and Laboratory Services (CSELS)

Electronic Case Reporting (eCR)……………………………………………….……12

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Introduction Electronic Health Record (EHR) systems provide a wealth of information to support public health surveillance and reporting as well as electronic referrals to community based services. The Centers for Disease Control and Prevention (CDC) is demonstrating standardized data exchange in the 2019 HIMSS Interoperability Showcase to support cancer reporting, vital records reporting, electronic case reporting (eCR), occupational data for health and e-referrals. This white paper describes a few of those efforts (e.g. cancer, vital records and eCR). Additional references are provided below for the data exchanges (e.g. Bidirectional Services eReferral and Occupational Data for Health) that are not included in this white paper:

• Bidirectional Services eReferral to facilitate data exchange for electronic referral to social services programs:

o Bidirectional Services eReferrals FHIR IG v0.1.0

• Occupational Data for Health which can be used to support public health reporting, population health activities, clinical decision support, and similar value-based care

o EHRs and Patient Work Information https://www.cdc.gov/niosh/topics/ehr/default.html

o Occupational Data for Health (ODH) Implementation Guide: STU1 ...

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NCHS: Vital Records Reporting

Description of Program: The National Vital Statistics System (NVSS) is the oldest and most successful example of inter-governmental data sharing in Public Health. The system, which is based on shared standards and procedures, is the mechanism by which NCHS collects and disseminates the Nation’s official vital statistics. These data are provided through contracts between NCHS and vital registration systems operated in the various jurisdictions legally responsible for the registration of vital events – births, deaths, marriages, divorces, and fetal deaths (https://www.cdc.gov/nchs/nvss/index.htm). The goal of the NVSS is to produce timely, accurate, high quality data based on birth and death certificates, and fetal death reports to inform public health at the local, state and national levels. For more than a century, these vital events have been collected in accordance with state and jurisdictional laws. Currently, there are 57 registration jurisdictions -- the 50 states, two cities (New York and Washington DC), and 5 US Territories (American Samoa, Guam, the Northern Mariana Islands, Puerto Rico, and the US Virgin Islands). Detailed data on all events are transmitted to NCHS for processing and dissemination so that NCHS can produce national multi-purpose statistics. There are about 4 million births, 3 million deaths, and 50,000 fetal deaths in the US each year.

NCHS closely collaborates with each individual jurisdiction, the National Association for Public Health Statistics and Information Systems (NAPHSIS), and the World Health Organization on the standardization of the information collected on vital records. NCHS, the jurisdictions, and NAPHSIS focus on developing standard certificates and reports as well as standardized procedures for data preparation and processing to promote a uniform national database.

Impact on PH Practice

Vital statistics inform key national and state level health and healthcare-related programmatic and policy decisions. The data are used to measure progress toward national and state health objectives, such as Healthy People 2000-2030 goals and are the basis for identifying emerging health trends. Examples are data on teen childbearing, prenatal care, cesarean, preterm and low birthweight rates, neonatal infection, infection during pregnancy, infant and maternal mortality, and cause of death such as suicide and opioid-related deaths. Selected vital statistics measures such as the cesarean delivery rate, the preterm birth rate, and selected causes of death are now available 6 months after the date of the event and are updated when final data becomes available.

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Recent examples of important public trends identified through vital statistics data include:

• The dramatic rise and more recent decline in the multiple birth rate.

• The recent decline in the cesarean delivery rate in the US.

• The rise in the preterm birth rate, especially in infants born late preterm (34-36 weeks of gestation).

• The increase in Sudden Infant Death and Sudden Unexplained Infant Death Syndromes (SIDS/SUIDS).

• The recent increase in death rate attributed to drug overdose occurring nationally and in each jurisdiction.

• The recent decline in life expectancy.

Interoperability of EHR and VR Systems

Many data items required by birth and death certificates and fetal death reports are captured in medical records. For example, the mother’s and infant’s medical records are recommended by NCHS and NAPHSIS as the source for more than ½ of all data items collected on the 2003 US Standard Certificate of Live Birth and the US Standard Report of Fetal Death. These data typically are gathered by hospital personnel from the hospital’s medical records using paper worksheets. However, NCHS and NAPHSIS has been collaborating on standards development so that Electronic Health Records (EHRs) can capture the common items in a way that they can be electronically transferred to the vital record. This will reduce duplicative entry by hospital and other medical personnel and improve data quality. Activities are underway to support the development of interoperability specifications for birth, death, and fetal death and to identify existing gaps that need to be addressed to support data exchange and interoperability of vital records information. As a result of the standardization, all attributes on the facilities worksheet can now be derived from the EHR. NCHS has been collaborating with NAPHSIS and other vital records stakeholders on vital records standards that are supported by the standards development organization (SDO), Health Level Seven International (HL7) and the standards organization, Integrating the Healthcare Enterprise (IHE). HL7 is one of several American National Standards Institute (ANSI) accredited SDOs operating in the healthcare arena to produce clinical and administrative data standards for the healthcare domain.1 IHE promotes the coordinated use of established standards such as DICOM (Digital Imaging and Communications in Medicine) and HL7 to address specific clinical needs in support of optimal patient care.2 NCHS sponsored a project that was approved and supported by the HL7 Public Health Work Group (PH WG) to develop an HL7 Vital Records Domain Analysis Model (VR DAM). The VR DAM identifies and describes the activities and data required for processing birth, death and fetal death records in compliance with the 2003 Revision of the U.S. Standard Certificates of Birth and Death, and the 2003 Revision of the U.S. Standard Report of Fetal Death. It facilitates consistency in the content and encoding of required vital records data and helps to ensure that HL7 standards developed for the vital records domain are derived from a common authoritative set of workflow and information requirements.

1 Health Level Seven International. Retrieved December 12, 2018, from http://www.hl7.org/.

2 Integrating the Healthcare Enterprise. Retrieved December 12, 2108 from http://www.ihe.net/.

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The VR DAM was first published as an HL7 standard in April 2011 and updated in 2017 and 2018. Building on this collaborative relationship, NCHS, NAPHSIS and other vital records stakeholders developed an HL7 Electronic Health Record System (EHR-S) Vital Records Functional Profile (VRFP). This activity was supported by the HL7 Electronic Health Records Work Group. The VRFP was derived from the HL7 EHR-S Functional Model (FM) Release 2, which provides a reference list of functions that may be present in an electronic health record system. The VRFP defines the functional requirements needed to capture vital records data at the point of contact or care with a patient and supports messaging between EHR systems and states, local registrars, and federal agencies. The profile was published in 2012 and, in 2015, was incorporated into a Public Health Functional Profile Release 2. Recent NCHS standards activities, in partnership with other vital records stakeholders, have been focused on developing HL7 technical messaging, clinical document architecture (CDA), and fast healthcare interoperability resources (FHIR) implementation guides (IGs) as standards for trial use (STU) for birth, death and fetal death reporting. Initial efforts were devoted to transmitting live birth, fetal death and death-related medical and health information from a provider setting to the vital records electronic registration systems. Currently, work is progressing to extend the information flow from providers to jurisdictions and bi-directional from jurisdictions to the NCHS and back to jurisdictions, returning coded cause of death, and race and ethnicity codes for death and fetal death information. An HL7 Version 2.6 Implementation Guide: Vital Records Death Reporting, Release (R) 1 STU R 2.1 - US Realm was published in August 2016, and an HL7 CDA R2 Implementation Guide: Vital Records Death Report, Release 1 STU 2 - US Realm on September 2017. An HL7 Version 2.6 Implementation Guide: Vital Records Birth and Fetal Death Reporting, Release 1 STU Release 2 was also published in February 2018. Current work is focused on balloting an HL7 CDA® Release 2 Implementation Guide: Birth and Fetal Death Reporting, Release 1 STU 2 - US Realm during the January 2019 ballot cycle with an anticipated publication date of April 2019. Work is also progressing with the development of an HL7 FHIR IG for Death Reporting for the bi-directional, electronic exchange of data between jurisdictional Electronic Death Registration Systems and NCHS, based on the 2003 revision of the U.S. Standard Death Certificate.

Standards activities for vital records are also taking place within the Integrating the Healthcare Enterprise (IHE) organization. This work is supported by the IHE Quality, Research and Public Health (QRPH) Committee. NCHS collaborated with QRPH to modify the IHE Maternal and Child Health (MCH) Technical Framework Supplement. The MCH Technical Framework Supplement describes the content to be used in automating the data captured for vital records purposes such as for the U.S. Standard Certificate of Live Birth and the U.S. Standard Report of Fetal Death. The Supplement describes how select information may pre-populate the vital records systems and potentially other stakeholder information systems for birth and fetal death events via the mechanism provided by the Request Form for Data Capture (RFD) integration profile. Additionally, NCHS facilitated the development of the IHE Birth and Fetal Death-Enhanced Reporting (BFDR-E) Profile that describes the content and format to be used within the pre-population data part of the Retrieve Form Request transaction from the RFD Integration Profile. This profile describes the content to be used in automating the data captured for vital records while adhering to the Birth Edit Specifications for the 2003 Revision of the U.S. Standard Certificate of Birth and the Fetal Death Edit Specifications for the 2003 Revision of the U.S. Standard Report of Fetal Death. NCHS has also worked with the QRPH committee to develop the IHE Vital Records Death Reporting (VRDR)

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Technical Framework Supplement to convey death related information using pre-population of data (using a medical summary) from EHRs to Jurisdictions. For the past several years, NCHS has been engaged in testing and demonstrating interoperability with state partners and system vendors at the IHE Connecthaton and Health Information Management Systems Society (HIMSS) Interoperability Showcase utilizing these HL7 and IHE developing standards. This year we will add testing for FHIR-based query to the EHR to inform the cause of death for death reporting to the jurisdictions. NCHS is also working to pilot test in several states interoperability between EHR and Vital Record systems. An Implementer’s Group consisting of six states (CA, FL, GA, MI, NH, and NY) has been formed to help design, test, and build standards-based approaches of enhancing existing electronic data systems that feed into the mortality data ecosystem. NCHS continues to reach out to additional EHR and Health Information Exchange (HIE) vendors to expand vital records interoperability capabilities to additional stakeholders. NCHS is working closely with Federal, State, and local partners in pursuit of a common goal of making more accurate and timely data available for public health surveillance and decision making in near real-time. We are focused on adopting best practices for information exchange that put less burden on data providers while providing more timely and automated data to improve public health and public safety.

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National Program of Cancer Registries: Cancer Reporting

Description of Program

The Centers for Disease Control and Prevention’s (CDC) Cancer Surveillance Branch (CSB) in the Division of Cancer Prevention and Control (DCPC) manages the National Program of Cancer Registries (NPCR). The CDC provides funds and technical assistance to central cancer registries (CCRs), including 46 states, the District of Columbia, Puerto Rico, the U.S. Pacific Island Jurisdictions, and the U.S. Virgin Islands, to improve cancer registration and cancer surveillance throughout the United States. CDC builds state and national capacity through support of the NPCR to monitor the burden of cancer, including disparities among various population subgroups, and provides data for research, evaluation of cancer control activities, and planning for future health care needs. Cancer surveillance is a complex system that captures longitudinal data from multiple data sources using a variety of methods. The cancer surveillance system consists of a complex network of hospitals, physician’s offices, treatment centers, clinics, laboratories, health departments, non-governmental organizations, and government agencies. In addition to reporting the occurrence of each reportable cancer (or tumor), the reporters provide information on the diagnosis, treatment and outcomes. These data are used for surveillance and development of comprehensive cancer control plans as well as health care planning and interventions. Improved accuracy of cancer surveillance influences all areas of public health interventions. Data also provide baseline measures for cancer related performance measures to monitor interventions designed to improve cancer outcomes such as cancer incidence and mortality. Data may also be used to identify disparities in access to care (diagnostic procedures and treatment) may help inform interventions to reduce these disparities. Quality cancer surveillance is limited by several challenges, including delay in availability of data, limited resources for collecting data, incomplete reporting and lack of standardized data exchange for non-cancer registry data sources. To help address these issues, CSB collaborates with hospitals, CCRs, national programs, and data sources (such as pathology laboratories, hospital registries, and physician offices) to advance automation of cancer registration. The development of best practices, guidelines, and recommendations for a modernized cancer surveillance informatics infrastructure have been made possible by using emerging health information technology and national and international standards. The cancer surveillance community identifies ways to use the Electronic Health Record (EHR) and other health information systems to meet program goals to improve the timeliness, quality, and completeness of data used to quantify the national cancer burden. For more information, visit https://www.cdc.gov/cancer/npcr/informatics/aerro/index.htm.

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Interoperability with Healthcare

Data collection standards for reporting cancer data from hospital cancer registries to CCRs and then to the national cancer programs have existed for over 24 years. Similar standards for Anatomic Pathology (AP) laboratory reporting were developed almost 20 years ago, and NPCR has assisted over 25 national and large regional reference laboratories to implement these standards. Until NPCR-AERRO began to address physician reporting interoperability in 2010, there were no standards specifically designed for physician reporting to CCRs. NPCR-AERRO relies on national/international Health Information Technology (HIT) standards to help establish interoperability with these disparate healthcare data sources, and addresses the following challenges:

• Delay in the availability of data.

• Limited resources for collecting data.

• Lack of completeness of reporting.

• Lack of standardized data exchange for non-cancer registry data sources.

• Limited data sets.

One way NPCR-AERRO has addressed these issues is to develop and implement the Integrating the Healthcare Enterprise (IHE) profiles for reporting cancer data from AP laboratories and physician offices to CCRs. IHE promotes the coordinated use of established standards to address specific clinical needs in support of optimal patient care.3

Interoperability with Anatomic Pathology (AP) Laboratories

The CCRs collect data on cancers or premalignant conditions diagnosed in AP laboratories. Since 2006, the CDC has been working with national and large regional laboratories to implement electronic reporting of narrative-based cancer pathology reports to central cancer registries using the North American Association of Central Cancer Registries (NAACCR) Standards for Cancer Registries Volume V:

Pathology Laboratory Electronic Reporting, Version 3.0 (NAACCR Volume V) specification. The success of this project is because the cancer community has been able to agree upon a single standardized reporting format and reportability codes that laboratories can use to implement reporting to all CCRs. The CCRs in the United States and Canada have extensive experience using HL7 Version 2.x standards in the electronic reporting process, and the cancer community developed the NAACCR Volume V as a standard reporting format that AP laboratories should use when submitting data to CCRs. It specifies the transmission of an HL7 Version 2.5.1 Observation Result (ORU) message from AP laboratories to the appropriate CCRs. The NPCR used this NAACCR Volume V standard to develop the IHE Anatomic Pathology Reporting to Public Health (ARPH) integration profile as a way to transmit AP reports from AP laboratories to CCRs, screening organizations, and other public health organizations. The HL7 AP workgroup and the NAACCR worked closely on this profile to ensure consistency with the HL7 standards. The IHE ARPH profile defines the actors and transactions involved in AP reporting to public health organizations. This integration profile makes it less complicated for AP laboratories, public health agencies, and software vendors to adopt a uniform method to report, transmit, and process data. It

1 https://www.iheusa.org/ihe-international, accessed 12/19/2018.

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facilitates international electronic reporting of AP data in the public health domain. In 2010, the CDC first tested the IHE ARPH profile at the IHE North American Connectathon and successfully demonstrated the ability to send electronic pathology laboratory reports from AP laboratory information system to CCRs according to the profile. The demonstration used the CDC NPCR-developed software, eMaRC Plus (electronic Mapping, Reporting and Coding), to enable CCRs to receive and process the AP data. The CDC works with national and regional laboratories to implement standardized electronic reporting of cancer cases to central cancer registries using the NAACCR Volume V standard based on the HL7 v.2.3.1 and HL7 v.2.5.1 ORU messaging standard. The ePath Reporting Project has implemented electronic reporting successfully with over 25 national and regional laboratories to more than 45 CCRs. The CDC has worked with the College of American Pathologists (CAP) to develop reporting of cancer pathology and biomarker data to registries in a structured format, rather than the traditional narrative format, to improve the quality and completeness of AP laboratory data. To date, the CAP has developed and published standardized forms (templates) for over 90 surgical pathology and 13 biomarker tests that pathologists would use to capture and report cancer pathology and biomarker data for clinical care and public health purposes. For more information on the CAP Cancer Protocol Templates: https://www.cap.org/protocols-and-guidelines/cancer-reporting-tools/cancer-protocol-templates. The CDC, CAP, Office of the National Coordinator (ONC), and vendors worked to develop the IHE Structured Data Capture (SDC) Profile that provides guidance for EHR vendors to develop EHR systems or other applications to automate the retrieval of a standard form and submit data based on the form. This profile was based on the work of the ONC Standards & Interoperability (S&I) Framework SDC Initiative. For more information: https://oncprojectracking.healthit.gov/wiki/display/TechLabSC/SDC+Home. The CAP has developed IHE SDC-compliant forms to report cancer pathology and biomarker data to CCRs; these forms will be required for use by pathologists in 2019.

Interoperability with Clinics and Physician Offices

Complete and high quality cancer reporting has traditionally relied on data from hospitals and pathology laboratories. Advances in medicine and changes in the healthcare delivery system now allow patients to obtain their care outside the acute care hospital setting. For example, private oncology clinics deliver 80% of all cancer care.4 Data collection from non-hospital sources, such as physician offices/clinics and radiation therapy centers, are not as consistent or complete. Cancer are under-reported for certain types of cancers, especially those diagnosed outside of hospitals including dermatology, urology and hematology clinics. For example, melanomas and prostate cancers have been shown to be under-reported when central registries rely only on hospital reporting. One study estimated that over 1,000 prostate and bladder cancer cases were not reported in a single year to a single CCR, or up to 54,000 additional prostate and bladder cancer cases per year nationally as the cancers were diagnosed in urologist’s offices.5 Additionally, information such as patient’s occupation, industry, and birthplace are more difficult to collect. Physician offices is a potential source of treatment and biomarker data for CCRs. When reporting

4 Twombly R. Medicare cost containment strategy targets several oncology drugs. J Natl Cancer Inst. 2004; 96( 17):1268-1270

5 Penberthy et al. Impact of Automated Data Collection from Urology Offices: Improving Incidence and Treatment Reporting in Urologic Cancers. J Registry Manag. 2010 Winter; 37( 4): 141-7

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from these non-hospital data sources does occur, it is through a manual process of identifying reportable cases and submitting paper copies of the medical record or sending certified tumor registrars (CTR) employed by the CCR into physicians’ offices to abstract the information from the paper-based medical records. These processes are very resource intensive, time-consuming, and vulnerable to errors in transcription. The need to access, with limited resources, the data contained in physician offices has driven the need to develop an automated electronic process for accessing and using the physicians’ EHRs to identify and report cancer cases. The use and development of EHR systems and technology can provide physicians with an efficient and more automated mechanism to report cancer cases to the registries. CDC works with the CCRs, NAACCR, EHR vendors, ONC, Centers for Medicare & Medicaid Services (CMS), immunization registry programs, and other partners toward successful implementation of electronic physician reporting to CCRs. NPCR worked to establish cancer reporting from physicians to registries as a criterion for Meaningful Use (MU). As a result, cancer reporting was identified as an optional criterion for Eligible Professionals (EPs) in MU Stage 2, and as one of several possible Public Health Reporting criteria in MU Stage 3. An NPCR-AERRO workgroup made up of stakeholders from CCRs, NAACCR, physician offices, professional organizations, other national standards setting organizations, and NPCR, developed the IHE cancer reporting profile, Physician Reporting to Public Health-Cancer Registries (PRPH-Ca), which was later used as the cancer reporting standard for MU Stage 2, published in the ONC 2014 Edition Certification Criteria. The workgroup used the Clinical Oncology Requirements for the EHR (CORE) document developed by the American Society of Clinical Oncology (ASCO) and National Cancer Institute (NCI) as the foundation for identification of data elements to include in the cancer report. The profile, developed in collaboration with IHE, provides a single, consistent format for electronic physician reporting to CCRs. Since 2011, the CDC tested the IHE PRPH-Ca profile with EHR vendors at the IHE North American Connectathon and successfully demonstrated, at the Healthcare Information and Management Systems Society (HIMSS) Showcases, the ability to send electronic cancer reports from physician EHRs to CCRs according to the profile. The PRPH-Ca profile defines the actors and transactions involved in physician reporting to CCRs. This content profile, which is based on HL7 Clinical Document Architecture (CDA), makes it easier for physician offices, public health agencies, and software vendors to adopt a uniform method to report, transmit, and process data. Currently, there are 47 EHR vendors (186 total products) certified for Stage 2 cancer reporting criteria and 30 EHR Vendors (52 total products) certified for Stage 3 cancer reporting. At least 36 CCRs have been testing files with EHR vendors and/or EPs, and many have received real patient data from EPs. The CDC meets regularly with six EHR vendors to work on specific issues identified by states during testing. An updated HL7 CDA implementation guide (IG) for physician reporting was completed in April 2015 and is cited as the standard to be used for MU Stage 3 in the ONC 2015 Edition Certification Criteria. The IG was published on the HL7 website (http://www.hl7.org/implement/standards/product_brief.cfm?product_id=398) and a link to it has been added to the CDC MU website.

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More information on meaningful use and public health can be found on CDC's Meaningful Use Web sites at www.cdc.gov/ehrmeaningfuluse/ and www.cdc.gov/cancer/npcr/meaningful_use.htm.

Benefit to Patient Care and Impact on Public Health Practice

The ARPH, SDC and PRPH-Ca profiles make it easier for anatomic pathology laboratories, clinics, physician offices, public health organizations, and software vendors to adopt a uniform method for reporting, transmitting, receiving and processing data. Implementation of these profiles will improve the ability of laboratories, physician offices, specialty providers (e.g., dermatology, urology, hematology, and oncology), and other non-hospital facilities to identify and send cancer registry related information and for CCRs to receive data for cancers diagnosed outside the hospital systems. Improved interoperability with all cancer surveillance data sources can provide:

• Improved capture of treatment data, leading to improved public health recommendations and interventions.

• Better risk factor data to inform and improve patient care.

• Bi-directional exchange of data between EHRs and CCRs for decision support and improved individual patient care.

• More targeted health interventions, leading to improved patient and population health.

• Improved timeliness, completeness, and quality of cancer case reporting to CCRs, which will ultimately improve monitoring of cancer survivors, patient care, and quality of care.

• Reduction in manual data entry required by CCRs.

• Real-time reporting from physician offices to CCRs funded by NPCR.

• Accurate and improved capability to identify and assess disparities in cancer treatment and access to care.

• More accurate cancer incidence data overall for the United States and by state and possibly contribute to clinical quality control indicators.

• Improved capability to investigate and intervene on rare cancers and special populations. In the long term, development and improvement of interoperability between clinical healthcare and public health systems will establish the infrastructure and means for bidirectional electronic data exchange between health care providers and public health programs. Automating systems and using EHRs and other health information technology systems will ultimately lead, in the long-term, to reduced health care costs by implementing case reporting functions that are modernized, automated, and streamlined. These efforts will contribute to the strengthening of public health systems and seamlessly connect them to clinical healthcare systems, and ultimately to improved cancer surveillance and public health.

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CSELS: Electronic Case Reporting

Description of Program

Public health surveillance is focused on the detection of acute, chronic, and emerging threats to the health of the population in order to direct disease control and prevention efforts.1 Public health surveillance relies on health care providers to report to public health agencies conditions and outbreaks that may impact the broader population. Case reporting is mandated through laws and regulations at state and local levels. Notification of cases to the Centers for Disease Control and Prevention (CDC) is then facilitated by agreements between states and the federal government.2 Historically, case reporting has been based on paper reports or Internet-based entry of reports to state health department systems, but these reports are often slow, incomplete, and place a substantial burden on health care providers.3 The future of surveillance is electronic case reporting (eCR), by which cases of reportable conditions are automatically generated from electronic health record (EHR) systems and transmitted to public health agencies for review and action without interrupting clinician workflow.

eCR holds promise for enhancing the quality and effectiveness of public health surveillance.4 Greater use of eCR can result in (1) more complete and accurate case data in near real time for public health action; (2) earlier detection of cases, permitting earlier intervention and lowered transmission of disease; (3) improved detection of outbreaks to allow earlier investigation and, potentially, earlier identification of risk factors for the spread of disease; (4) creation of a new infrastructure to support rapid reporting of newly recognized and emerging conditions; (5) feedback to clincial care on the status of these conditions in their jurisdiction and relieve clinicians from the burden of reporting.

Coordination between health care providers and public health agencies is essential for the monitoring, control, and prevention of disease and is best carried out through a bidirectional exchange of information. In 2009, the US Congress passed the Health Information Technology for Economic and Clinical Health Act to promote and expand the use of interoperable health information technology (IT) to improve the quality of health care.5,6 The act—funded with $19.2 billion from the American Recovery and Reinvestment Act—provided financial incentives to eligible health care providers and hospitals to convert from paper records to EHR systems. The act empowered the Centers for Medicare & Medicaid Services and the Office of the National Coordinator for Health Information Technology to provide incentives for meaningful use of EHRs for population and public health. Driven by the public health community, the Centers for Medicare & Medicaid Services and the Office of the National Coordinator for Health Information Technology added eCR as an option that eligible health care providers and hospitals could choose to implement starting in 2018 to receive these financial incentives.7

Challenges to National Implementation

In the past, public health agencies trying to establish local eCR systems have faced several challenges. One of the reasons to pursue a shared services approach to eCR is efficiency, and health care providers and IT developers have sought efficient solutions for reporting cases to all jurisdictions nationwide. However, reaching such efficiencies has been frustrated when individual public health jurisdictions requested different data elements, reporting formats, and structures and used their own criteria for reporting rather than a standardized approach. Efficiency has also been frustrated by heterogeneity in the diagnostic and order codes used by providers and laboratories in medical records.

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eCR Technical Framework

Digital Bridge (www.digitalbridge.us) is a collaborative, solution-oriented partnership between health care delivery organizations, EHR developers, and public health to promote bidirectional information exchange between healthcare and public health. eCR is the first information exchange challenge the Digital Bridge partners chose to address. We have adopted a policy and technical framework for eCR with the overall goals of fostering interoperability, reducing the work of case reporting for EHR developers and health care providers, addressing the jurisdiction-specific reporting requirements of state and local health agencies, and establishing a governance structure to support the evolution and improvement of eCR. To accomplish this goal for eCR, we are using standards that are available and widely adopted by health care providers in their existing EHR systems.

The generation of an electronic initial case report (eICR) takes place in the EHR (Figure 1). The eICR for all reportable conditions consists of the same set of data elements, vocabularies, and value sets. The list of data elements was identified by the Council of State and Territorial Epidemiologists (CSTE) largely based on elements already included in certification of EHRs, but with a very limited amount of data that are specific to public health needs – like travel history. The data elements include such items as patient name and demographic characteristics, location, condition or disease, provider, and facility (Figure 2). These elements were the basis for the HL7 Electronic Initial Health Case Report Implementation Guide found at: http://www.hl7.org/implement/standards/product_brief.cfm?product_id=436. Put together, these elements will include enough information to allow public health personnel to decide whether to initiate a public health investigation of a case, thus substantially decreasing the burden of work for health care providers responding to follow-up telephone calls, facsimiles, and e-mails sent from public health departments to gather initial case-related information.

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Figure 1. Overview of a shared services model of components and data flow for electronic case reporting in the United States.

Figure 2. Draft data elements for inclusion in electronic initial case reports (eICRs) from electronic health records to intermediary platforms in the United States. Abbreviations: DOB, date of birth; ID, identification. Source: Council of State and Territorial Epidemiologists’ Initial Case Report Task Force.

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In the future, there may be opportunities to further decrease the follow-up burden of work on health care providers by expanding the data elements in the eICR or by electronically requesting and receiving supplemental information not included in the eICR. One way of obtaining condition specific supplemental data would be to use electronic forms to capture data using the IHE retrieve form for data capture (RFD) standard.

As part of normal patient care, when a provider documents diagnoses, or considers a reportable condition, a match to this information in the EHR will trigger the creation of an eICR. These trigger codes, available as the Reportable Condition Trigger Codes (RCTC), are identified by Public Health and provided to healthcare for use. They are based on International Classification of Diseases, Tenth Revision codes for diagnoses, LOINC (Logical Observation Identifiers Names and Codes) for laboratory testing orders, or SNOMED CT (Systematized Nomenclature of Medicine–Clinical Terms) for clinical information and laboratory results. The current RCTC can be found at https://phinvads.cdc.gov/vads/SearchVocab.action. These codes have been vetted by CSTE and CDC program experts. The RCTC currently includes codes for 6 conditions (i.e., gonorrhea, chlamydia, salmonella, pertussis, Hepatitis C and Zika virus infections). Trigger codes that represent all reportable conditions will be rolled out over time. However, trigger codes will not remain static; they must evolve as diagnostic tests and case definitions change. The list of standard trigger codes will be implemented in EHRs but can be received using a subscription service that will distribute trigger codes to EHR implementers. Additionally, new and updated trigger codes can rapidly be made available in response to new or evolving conditions, such as was seen with outbreaks of severe acute respiratory syndrome (SARS), Middle East respiratory syndrome coronavirus, enterovirus D68, and Zika virus.

After potential cases are identified through trigger codes, the eICR will automatically be generated with patient information and transmitted from the EHR to a shared services intermediary platform via secure, broadly used data transport mechanisms. Currently, the platform infrastructure is provided by the APHL Informatics Messaging Service, a secure, cloud-based platform that can receive, briefly hold, and transmit electronic messages.8 On the platform, the eICR is validated and processed by a decision support service, the Reportable Conditions Knowledge Management System (RCKMS). 9 The RCKMS service serves health care providers by assessing the reportability of the information in the eICR against the relevant jurisdiction’s mandated public health case reporting requirements. If the initial report is determined to be reportable to public health, the eICR and the Reportability Response are then routed to the appropriate agency or agencies. For every eICR, a Reportability Response document will be returned to the health care provider. This serves not only to validate that the eICR was sent and processed but delivers information from public health to the provider about the condition that was identified and resources to help them manage it. The Reportability Response Implementation Guide can be found at: http://www.hl7.org/implement/standards/product_brief.cfm?product_id=470.

Development of HL7 FHIR Implementation Guides to support eCR is also underway. We expect a phased transition to FHIR implementation as the standard matures and there is more uptake in the industry.

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Working Towards National eCR Implementation

Public health, healthcare delivery organizations and EHR developers have worked together to begin eCR implementation through the Digital Bridge partnership. Together, these organizations have identified the important technical elements needed for the first phase of eCR implementation, including standards, platform structure, tools, and guides.

The Robert Wood Johnson Foundation has supported the convening of these Digital Bridge stakeholders to discuss vision, governance, and initial steps toward eCR implementation. Participating stakeholders agreed to focus on the secure sharing of reports of potential cases, the periodic evaluation and evolution of standards, and the tools and processes for continual improvement. The Digital Bridge governance structure for eCR supports the iterative construction of systems, routine communication and alignment to regulatory timelines, and realistic software release cycles. Participating stakeholders also agreed that successful eCR implementation will require a commitment by state and local public health agencies and public health associations (e.g., APHL, Association of State and Territorial Health Officials, CSTE, National Association of County and City Health Officials) to a clear, shared vision of an interoperable system for eCR. In November and December 2018, two healthcare organizations, Houston Methodist and Intermountain Healthcare, with their relevant public health agencies, have implemented in production this approach to eCR. There are several more healthcare organizations in CA, NY, KS and MI working towards implementation in Spring 2019.

With all of this progress, there is now a need to open operations for eCR on a large scale. The next steps to opening to broad implementation are to (1) provide onboarding guidance for healthcare/vendor implementation, (2) ensure communication and coordination of partners, (3) provide clear timelines to partners for broader implementation of major eCR components, and (4) hold partners accountable for timelines and deliverables.

Conclusion

Coordination and bidirectional information exchange between health care providers and public health agencies are essential for the prevention and control of disease. eCR can improve public health by enhancing the speed and accuracy of this crucial exchange and by transforming population health and disease prevention. Collective commitment among, health care, health IT and public health organizations is now needed to achieve the vision of interoperable, secure, and nationwide eCR in the United States.

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References

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7. US Government Printing Office . Medicare and Medicaid programs: electronic health record incentive program—stage 3 and modifications to meaningful use in 2015 through 2017. https://www.federalregister.gov/articles/2015/10/16/2015-25595/medicare-and-medicaid-programs-electronic-health-record-incentive-program-stage-3-and-modifications#h-113. Accessed January 29,2019.

8. Association of Public Health Laboratories. AIMS platform. http://www.aphl.org/programs/informatics/pages/aims_platform.aspx. Accessed January 29,2019.

9. Council of State and Territorial Epidemiologists. Surveillance/informatics: reportable condition knowledge management system. http://www.cste.org/group/RCKMS. Accessed January 29,2019.

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CDC Contacts

Nedra Garrett – Ngarrett@cdc.gov Hetty Khan – Hkhan@cdc.gov (Vital Records Reporting) Laura Conn – Lconn@cdc.gov (Electronic Case Reporting) Sandy Jones – SFJones@cdc.gov (Cancer Reporting) Wendy Blumenthal – Wblumenthal@cdc.gov (Cancer Reporting) Arun Srinivasan – Asrinivasan1@cdc.gov (Bidirectional Services eReferral) Genny Luensman – Gluensman@cdc.gov (Occupational Data for Health)