PH+Reporting+User+Story+-+Cancer

include component="page" wikiName="siframework" page="PHRI Header" =User Story: Transmitting Cancer Reports from Pathology Laboratory and Ambulatory EHR to State Public Health Departments for Public Health Cancer Surveillance=

Contact Info:
Wendy Blumenthal (wblumenthal@cdc.gov, phone: 770.488.1131) -- Epidemiologist, Cancer Surveillance Branch, Centers for Disease Control and Prevention Sandy Jones (sft1@cdc.gov, phone: 770.488.5689)

Date Received:
11/16/2011

**1.2 User Story Narrative**
**1.2.1 Goal** The National Program of Cancer Registries (NPCR) is funded and managed by CDC’s Cancer Surveillance Branch (CSB) in the Division of Cancer Prevention and Control (DCPC). NPCR provides funds and technical assistance to 48 central cancer registries (CCRs) 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.

State-based cancer registries are data systems that collect, manage, and analyze data about cancer cases and cancer deaths. In each state, medical facilities (including hospitals, physicians' offices, therapeutic radiation facilities, freestanding surgical centers, and pathology laboratories) report these data to a central cancer registry. Cancer surveillance is a complex system that captures longitudinal data from all of these data sources using a variety of methods. The cancer surveillance infrastructure 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 recording the occurrence of each reportable cancer (or tumor), the reporters provide information to CCRs on the diagnosis, treatment and outcomes.

These data are used for surveillance and development of comprehensive cancer control programs and health care planning and interventions. Improved accuracy of cancer surveillance impacts all areas of public health interventions. Data also provide baseline measures and performance measures for all cancer related interventions designed to reduce cancer incidence or improve early detection. Identification of disparities in access to treatment or in treatment received can inform interventions to reduce these disparities and reduce the cancer morbidity and mortality in special populations.

**1.2.2 Description of Data Reporting Events, Actors and Triggers** This user story covers two settings in which data are collected, Anatomic Pathology Laboratories and Physician Offices.

Starting in the physician office, a patient is seen by a physician, who performs a procedure (e.g., a biopsy) based on a suspicion of cancer. The physician enters relevant information about the patient, the encounter, the procedure, and the ordered test into the EHR system for his or her own clinical purposes. The physician sends the tissue sample obtained during this procedure to a pathology laboratory for analysis.

The pathologist at the pathology laboratory analyzes the tissue sample and determines that the patient has cancer. The pathologist enters the relevant information into the Pathology Laboratory Information System (Pathology LIS) for the laboratory’s purposes, including: patient information; description of the tissue sample; characteristics of the identified tumor (histology, behavior, grade, stage, etc.). The pathology laboratory sends a report of the results to the ordering physician. The pathology laboratory also sends a report, using the North American Association of Central Cancer Registries (NAACCR) Standards for Cancer Registries Volume V: Pathology Laboratory Electronic Reporting (Version 2.2 or higher), to the public health cancer registry where the patient resides. The laboratory could also send the reports through a Health Information Exchange (HIE). The trigger for reporting cancer cases to CCRs is a list of reportable cancers. The NPCR has developed a list of ICD-9 CM codes that laboratories can use to identify reportable cancers for all states. There is also a NAACCR search term list that can be used by laboratories to identify cases to be reported. A third method is that some laboratories have their own indicator within the Pathology LIS that allows the pathologist or a coder to identify cases as reportable cancers.

The physician receives the pathology laboratory report, incorporates the findings into the EHR, and enters a diagnosis into the EHR system for the patient based on the pathology results. The physician follows up with the patient and develops a treatment plan. Using the same list of ICD-9-CM codes and/or a list of CPT4 procedure codes as the trigger, the EHR system reports the new diagnosis of cancer and relevant information to the public health cancer registry (initial case report), using the Integrating the Healthcare Enterprise (IHE) Physician Reporting to a Public Health Repository-Cancer Registry (PRPH-Ca) Profile format. The cancer reporting to the cancer registry can either be performed by the EHR as a completely automated function or the EHR could pre-populate a form and give the physician an opportunity to review the report and enter any additional information if needed. Reports could also be sent through an HIE.

Currently the overwhelming majority of pathology laboratories capture all of the information in their Laboratory Information Systems that is needed for reporting to registries. Many report electronically using a standard developed by the North American Association of Central Cancer Registries (NAACCR).

The majority of physician offices are not currently reporting to public health cancer registries, resulting in a gap in knowledge of non-hospital cancer diagnoses and treatment. Physicians’ offices that do report to cancer registries accomplish it via submission of paper reports or through manual data entry into web-based forms. We believe that most of the information required by cancer registries is captured in ambulatory/physician office EHRs, and that reporting to public health cancer registries should not change the normal workflow of the physicians. Specialty oncology EHRs probably capture all of the information required by cancer registries.

The frequency of pathology laboratory reporting to public health cancer registries varies: daily if reporting is performed electronically, monthly or annually if reporting is performed by paper document submission. Frequency of physician reporting to cancer registries is currently monthly or annually. In the future, with the use of EHRs to automate physician reporting, it could be done on a daily, weekly or monthly basis, depending on requirements of the public health cancer registry. State cancer registries are currently able to process pathology laboratory reports in HL7 2.3.1 and 2.5.1 formats, using the CDC-developed tool eMaRC Plus. Some states have their own in-house systems which are also capable of processing these HL7 reports. eMaRC Plus also has the capability to receive and process physician reports formatted according to HL7 CDA format specified in the IHE PRPH-Ca profile (see additional information in Data section below). In addition to mapping the various HL7 formats to the NAACCR data standard, eMaRC Plus performs various processing functions including auto-coding of certain data elements, vocabulary mapping, and natural language processing. After processing and any needed manual review, registries can export a completed cancer abstract and import it into their central cancer registry database. Registries complete various additional processing steps in their cancer registry systems, and then are able to use the data for follow-up, analysis and reporting de-identified patient data for all diagnosed cancer cases to the national level.

**1.2.3 Data** [|Appendix 1, Table 1] provides the required Pathology Laboratory Reporting data elements, which are based on the nationally accepted the North American Association of Central Cancer Registries (NAACCR) Standards for Cancer Registries Volume V: Pathology Laboratory Electronic Reporting (Version 2.2 or higher) which have been accepted by all public health cancer registries The HL7 v2.5.1 standard has also been accepted internationally as the IHE Anatomic Pathology Reporting to Public Health (ARPH) profile.

[|Appendix 1, Table 2] provides the data elements that have been identified for physician reporting in the IHE Physician Reporting to a Public Health Repository - Cancer Registry (PRPH-Ca) profile. The profile specifies the data elements, vocabularies, and HL7 Clinical Document Architecture (CDA) for reporting, and uses HL7 Continuity of Care Document (CCD) templates. This profile has gone through IHE’s review and comment process and is currently published for trial implementation. The data elements have been agreed upon by a workgroup consisting of state public health cancer registries and a number of other stakeholders. NPCR plans to combine the PRPH-Ca profile and other documents to make up a Cancer Reporting Implementation Guide that will be vetted nationally and may be published by NAACCR.

**1.2.4 Other information**

**Current Health Information Standards and Program Participation in National Health Information Technology Standards**

Anatomic Pathology Laboratory Reporting to state cancer registries uses the NAACCR Standards for Cancer Registries Volume V: Pathology Laboratory Electronic Reporting (Version 2.2 or higher) that can be found at []. Physician reporting to state cancer registries from EHRs will use the Integrating the Healthcare Enterprise (IHE) Physician Reporting to a Public Health Repository-Cancer Registry (PRPH-Ca) Profile ([]). Both of these specifications use HL7 standards and also use national and/or internationally recognized vocabulary standards, including but not limited to: Logical Observation Identifiers Names and Codes (LOINC) version 2.36. Code; Systematized Nomenclature of Medicine--Clinical Terms (SNOMED CT) International Release – July 2009; 2010 Standard Occupational Classification (SOC); Public Health Data Standards Consortium Source of Payment Typology Version 4.0; International Classification of Diseases for Oncology, Version 3 (ICD-O-3) Morphology; AJCC Cancer Staging Manual, 7th Edition; International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM), 2011 Addenda Diagnosis Code; American Medical Association’s Current Procedure Terminology, 4th Edition (CPT-4) Procedure Code; RxNorm, Version 2011-5.

Other standards/specifications used include:


 * 1) //HITSP_V2.5_2009_TP50_-_Retrieve_Form_for_Data_Capture.pdf //
 * 2) //IHE_ITI_Suppl_RFD_Rev2-1_TI_2010-08-10.pdf – IT Infrastructure Supplement Guide. //
 * 3) //IHE Patient Care Coordination (PCC) Technical Framework Supplement CDA Content Modules //
 * 4) //HL7 Implementation Guide: CDA Release 2 – Continuity of Care Document (CCD) //
 * 5) //Associated CCD schemas and templates. //

CDC NPCR staff participate in a wide variety of national health information technology standards activities, including: HL7 workgroups, IHE committees, and S & I Framework initiatives.

**Relevant Cancer Statistics**

In 2007, there were 562,875 deaths from cancer in the US, ranking it as the second highest cause of death. The numbers of non-institutionalized adults who have ever been diagnosed with cancer is18.6 million, and the percent of non-institutionalized adults who have ever been diagnosed with cancer is 8.2%. Data on approximately 1.2 million new invasive cancer cases are collected by NPCR each year.

Advances in medicine and changes in the healthcare delivery system now allow patients to obtain their care outside the acute care hospital setting. Private oncology clinics deliver 80% of all cancer care. Data collection systems from other sources such as these physician offices/clinics and radiation therapy centers, however, are not as consistent or complete with reporting. This leads to under-reporting of certain types of cancers, especially those now diagnosed and treated outside of hospitals, such as in dermatology, urology and hematology. Both melanomas and prostate cancers, for example, 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 single year to a single CCR, or up to 54,000 additional prostate and bladder cancer cases per year nationally.

**1.3 Stakeholder Commitment** Many state cancer registries already receive electronic pathology laboratory reports and there are registries interested in receiving physician reports from EHRs, so we expect there will be states interested in participating. Two public health cancer registries, Missouri and Kentucky, currently receive ARRA Comparative Effectiveness Research funding through NPCR for pilot testing implementation of physician reporting, and other states have also expressed interest in getting involved. Any public health cancer registry that uses or is willing to use eMaRC Plus for receiving and processing both pathology and physician reports will be ready to participate in pilot testing.

Two vendors, 4Medica and Sunquest have successfully tested the ARPH profile at IHE Connectathon and demonstrated at HIMSS and other Showcases. Three EMR vendors, Greenway, eMDs and Allscripts tested the PRPH-Ca profile at the 2010 IHE Connectathon and demonstrated implementation of the profile specifications at HIMSS and/or other Showcases. These three vendors plan to test and demonstrate again, along with three new additional EMR vendors and one state program that have signed up to test at Connectathon: Epic, GE, EndoSoft and Washington State.

The North American Association of Central Cancer Registries (NAACCR) is a committed stakeholder in supporting the development and implementation of standardized reporting from pathology laboratories and physician offices. The NAACCR community took the lead in the development of the pathology laboratory reporting standard and has been supporting the maintenance of the laboratory standard through the NAACCR Pathology Data Workgroup activities. NAACCR has identified several of their working group members to monitor and participate in the development and testing of the IHE PRPH-Ca profile to ensure that it will meet cancer registry data needs.

Supporting Files:

 * **Description** || **File** ||
 * This is the word version of the initial user story submission, including both tables in the appendix. || [[file:Initial Draft Submission - Cancer User Story - November 16 2011.docx]] ||
 * This document contains "**Appendix 1 Table 1**" which provides the required Pathology Laboratory Reporting data elements. || [[file:Appendix 1 - Cancer User Story - Pathology Laboratory Reporting to Cancer Registry.docx]] ||
 * This document contains "**Appendix 1 Table 2**" which provides the data elements that have been identified for physician reporting in the IHE Physician Reporting to Public Health Repository - Cancer Registry (PRPH-Ca) profile. The profile specifies the data elements, vocabularies, and HL7 Clinical Document Architecture (CDA) for reporting and uses HL7 CCD templates. || [[file:Appendix 1 - Cancer User Story - Physician Reporting to Cancer Registry.docx]] ||

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