Skip directly to search Skip directly to A to Z list Skip directly to navigation Skip directly to page options Skip directly to site content

NPCR-AERRO eHealth Initiatives

Purpose and Goals

During the State of the Union Address on January 20, 2004, President George W. Bush stated that “By computerizing health records, we can avoid dangerous medical mistakes, reduce costs, and improve care.” The President set a health initiative goal to implement an Electronic Health Record (EHR) within 10 years that would be available for most Americans at any time or place. In order to achieve this goal, the President charged the Secretary of Health with overseeing activities that would transition the United States health care system from a traditional paper-based system to standardized electronic health records. The Secretary of Health created the Office of the National Coordinator at the U.S. Department of Health and Human Services (HHS) to serve as his advisor and provide leadership for the development and implementation of a nationwide health information network.

In January 2009, President Barack H. Obama took office. President Obama builds on President Bush’s views, making “broad adoption of standards-based electronic health information systems, including electronic health records” a central part of his Technology agenda. The Obama health care platform states, “Most medical records are still stored on paper, which makes them difficult to use to coordinate care, measure quality, or reduce medical errors,” and implementation of the EHR can bring “improvements such as reduced hospital stays, avoidance of duplicative and unnecessary testing, more appropriate drug utilization, and other efficiencies.” Further, in his February 24, 2009 address to Congress, President Obama emphasized the need to “invest in electronic health records and new technology that will reduce errors, bring down costs, ensure privacy, and save lives.”

NPCR-AERRO participates in national and international activities related to the development of standardized, interoperable systems to facilitate the development of an EHR, including the activities highlighted below. The purpose of NPCR-AERRO’s participation in these activities is to represent the cancer surveillance community’s interests and provide information to the cancer community stakeholders.

eHealth initiatives that are moving the nation toward a nationwide EHR include—

  • Healthcare Information Technology Standards Panel (HITSP) is a partnership between public and private sectors with the common goal of developing a widely accepted and useful set of standards enabling interoperability among health care software applications at the local, regional, and national health information network in the United States. The HITSP responded to requests from HHS and AHIC and published several critical products.
  • The Office of the National Coordinator for Health Information Technology (ONC HIT) Certification Program is the second part of the ONC’s two-part approach to establish a transparent and objective certification process. The ONC defines a process to ensure that electronic health record technologies meet the adopted standards and certification criteria to help providers and hospitals achieve Meaningful Use objectives and measures established by the Centers for Medicare & Medicaid Services. In the ONC HIT certification program, vendors submit products to accredited testing laboratories, and if their products meet the requirements, ONC-authorized certification bodies certify them. The ONC posts approved products on their Certified Health IT Product List.
  • Nationwide Health Information Network (NHIN) is an initiative to develop a nationwide interoperable health information infrastructure that will allow the secure exchange of information across the health care community, including the consumer. This network will enable consumers and health care providers to have ready access to their health information at any location or point in time for clinical decision making.

The ONC and National Institutes of Standards and Technology (NIST) incorporate the new standards into the certification process, and the NHIN uses the standards in its information exchanges.

  • The Healthcare Information and Management Systems Society (HIMSS)-sponsored Integrating the Healthcare Enterprise (IHE) fosters participation and collaboration among national and international health care professionals and industry to find ways to improve data exchange between health care computer systems. IHE supports the use of national established standards such as Digital Imaging and Communication in Medicine (DICOM) and Health Level Seven (HL7). There is cross-fertilization between the HITSP and IHE initiatives. These two initiatives actually use and build upon work from one another.
  • The Public Health Data Standards Consortium (PHDSC) was established in 1999 to promote the use of standardized information on health and health care. The PHDSC was incorporated in 2003 as a not-for-profit organization. It is a national non-profit member-based partnership of federal, state, and local health agencies, national and local professional associations, and public and private sector organizations and individuals. The PHDSC works to bring a common voice from public health and health services research communities to the national data standardization efforts.
  • The Council of State and Territorial Epidemiologists (CSTE) Position Statements are case definitions that describe an official list of nationally notifiable conditions and a standardized reporting definition for each condition on the official list. The position statement must comply with AHIC-recommended standards to support “automated case reporting from electronic health records or other clinical care information systems.”
  • Health Level Seven (HL7) is one of several American National Standards Institute (ANSI)-accredited standards developing organizations (SDOs) operating in the health care arena. Most SDOs produce standards (sometimes called specifications or protocols) for a particular health care domain such as pharmacy, medical devices, imaging, or insurance (claims processing) transactions. HL7’s domain is clinical and administrative data. HL7 has several working committees that focus on specific topics to address interoperability issues. There are currently two working committees that have potential implications for cancer registries: the HL7 Anatomical Pathology Committee and the HL7 Public Health and Emergency Response Committee.

Activities and Timeline


Activity Status Release Date
Participate in all national and international eHealth initiatives to ensure that public health and cancer surveillance needs are addressed. Ongoing Not applicable

Analysis and Design

Activity Status Release Date
Work with IHE Anatomic Pathology Domain to develop an Anatomic Pathology Reporting to Public Health (ARPH) profile [PDF-1.48MB] that is based on the United States NAACCR Volume V standard and is harmonized internationally. This profile is available for implementation into laboratory information systems. Complete August 27, 2009
Work with IHE Quality, Research, and Public Health Domain to develop a Physician Reporting to a Public Health Repository – Cancer Registry (PRPH-Ca) profile that describes the information required for reporting from physician offices to cancer registries. Complete September 2011
Participate on HL7 EHR Ambulatory Oncology Task Group to integrate the needs of cancer registries and the public health community into the HL7 EHR-S Ambulatory Oncology Functional Profile. Complete None
Participate in national and international activities representing the cancer community in the development of standardized, interoperable systems to facilitate the development of an EHR. Ongoing Not applicable


Activity Status Release Date
Demonstrate at Public Health Information Network (PHIN) conferences the IHE profiles for data exchange between 1) physician offices/EHR systems and central cancer registries and 2) anatomic pathology laboratories and central cancer registries. Complete September 2009, August 2011, and April 2014
Participate in the HIMSS-IHE Showcase to test and demonstrate the IHE ARPH profile that transmits information from pathology laboratories to the EHR and appropriate state cancer registries using the NAACCR Standards for Cancer Registries Volume V: Pathology Electronic Reporting HL7 v. 2.3.1 Observation Result (Unsolicited) (ORU) message format. Complete January and March 2010, February 2011, February 2012, and March 2013
Participate in the IHE Anatomic Pathology Domain to implement the ARPH profile into one or more EHR software vendors’ applications that uses the HL7 v.2.5.1 standard for text-based reports. Complete None
Participate in the IHE Quality, Research, and Public Health Domain to implement the IHE Provider Reporting to a Public Health Repository – Cancer Registry profile to support data exchange from the provider EHR to the central cancer registries. Complete None
Participate in the HIMSS-IHE Connectathon and Showcase to test and demonstrate the IHE Provider Reporting to a Public Health Repository – Cancer Registry (PRPH-Ca) profile that will transmit information from provider EHRs to the appropriate state cancer registries using CDA. Complete February 2011
January 2012
January 2013
Participate in the HIMSS-IHE Showcase to test and demonstrate the (PRPH-Ca) profile and the use of different modules of the NHIN CONNECT software that will support the requirements for cancer registries and public health reporting. Complete February 2011
February 2012
March 2013

Success Stories

In 2010, the NPCR-AERRO Team and three software vendors successfully demonstrated the ability to implement the IHE ARPH profile (based on NAACCR Volume V) and the IHE Clinician Reporting to a Public Health Repository – Cancer Registry (CRPH) profile using existing IHE and HITSP infrastructure, constructs, and transactions. The ability to use existing infrastructure made implementation of our cancer registry profiles very quick. The IHE ARPH and CRPH profiles define the specifications needed to send electronic pathology laboratory reports from a pathology laboratory information management system and clinical data on cancer patients from the clinician electronic medical record system to the public health cancer registry. eMaRC Plus (electronic Mapping, Reporting and Coding) software was used to demonstrate the receipt and processing of the pathology and clinician/physician office data.

In 2008, NPCR-AERRO collaborated with the PHDSC and IHE to develop a white paper titled Building a Roadmap for Health Information System Interoperability for Public Health that describes the public health domain. NPCR-AERRO provided the cancer registry scenario as one of the examples for public health.