Sandy Jones Public Health Advisor Centers for Disease Control and Prevention National Center for Chronic Disease Prevention and Health Promotion April 25, 2011 Understanding the Public Health Functional Profile (PHFP) - Cancer Registry Domain

Overview: Cancer Surveillance  Cancer is a reportable disease −Cancer Registries Amendment Act in 1992  Collect standardized data on all cancers diagnosed −not a sample or a survey  NPCR U.S. population coverage - 96% percent −In collaboration with NCI – 100% population coverage  Cancer Surveillance System −Data on approximately 1.2 million new invasive cancer cases are submitted to CDC each year  Cancer is the only chronic disease for which we have population based incidence data in every state

The Problem  Traditional data collection primarily from hospitals and anatomic pathology laboratories  Need for broad implementation of standardized, electronic reporting from anatomic pathology laboratories to state registries  As medical advances have occurred, diagnosis and treatment of certain cancers has moved from the acute care setting to clinic/physician office  Because cancer registries have not traditionally required physicians to actively report cancer cases, under-reporting or a delay in reporting occurs.  Incidence rates and research are adversely affected by the incomplete data collection.

PHFP – Cancer Registry Goals  Enable electronic communication between clinical care participants and public health to:  Report on cancer trends  Assess impact of cancer prevention and control efforts  Research and respond to suspected increases in cancer occurrence  Produce more complete, real-time, quality data to make clinical care decisions and positively impact the quality of care provided

PHFP – Cancer Registry Scope  Participants in the Cancer domain’s EHR-S information exchange include:  Clinic/Physician Offices (Dermatology, Urology, Hematology, Oncology, Primary Care Physicians, etc.)  Laboratories (Anatomic, Clinical, Molecular)  Freestanding Radiation/Treatment Centers  Hospitals  State/Territorial (Public Health) Cancer Registries  CDC National Program of Cancer Registries (NPCR)

PHFP – Cancer Registry Data in Electronic Health Records (EHRs)  PHFP contains EHR-S functionality that addresses the data reporting requirements for the cancer registries  Cancer Registries have established standards for reporting from anatomic pathology laboratories and physician offices  Most information already in EHR-S, including:  Patient Demographics  Provider/Facility Information  Pathology Laboratory Information  Diagnosis information, including tumor characteristics  Stage/prognostic factors  Cancer Treatment  Cancer Treatment Plan