Jennifer Ruhl, BBA, RHIT, CTR Public Health Analyst NCI SEER An innovative approach to improve the quality of data collection for hematopoietic diseases.

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Presentation transcript:

Jennifer Ruhl, BBA, RHIT, CTR Public Health Analyst NCI SEER An innovative approach to improve the quality of data collection for hematopoietic diseases

Overview Current state of Hematopoietic disease collection Problems identified Hematopoietic Work Group Hematopoietic Database

Current State of Hematopoietic Data Collection Only one disease is collected No consistency as to which phase is collected Unable to determine how many diseases transform

Problems Identified Guidelines for collecting hematopoietic diseases outdated Information available not easily understood nor uniformly used Complete treatment and survival information not being captured

Hematopoietic Work Group

Members NCI SEER ACoS CoC CDC/NPCR CCR NAACCR NCRA 4 physicians Hospital registrars Central registrars Independent consultants Ad hoc advisors

Process Bi-monthly meetings Database and development Populating the database Rules development Rules revision

Purpose of Work Group Assess registrars’ needs Improve case-finding Improve coding Improve documentation

Process of Data Collection Review of SINQ questions Draft of multiple primary rules developed by NCI SEER staff Committee review of rules Consultation with Ad Hoc consultants Revisions and second reviews

Hematopoietic Database

Database Development Consultants collected information on all the hematopoietic diseases Physicians reviewed and added additional information Committee review

Basic Information Available for download from the SEER website Updated annually to keep current with medical technology Links to SEER Rx

Contents of Database Definition of disease Immunophenotyping Genetics data Definitive diagnostic method Alternate names Benign precursors Treatment Transformations

The front page of the Hematopoietic database

Locating a disease

Specific disease information

Additional Features Mapping to other coding systems “Did you know” Bells and whistles

Beta Testing Mini reliability study on new rules Hematopoietic database distributed to working group members

Distribution Rules and database to be effective for cases diagnosed January 1, 2010 and forward Rules and database to be distributed in later part of 2009.

Education and Training State and Regional workshops NCRA 2009 and 2010 NAACCR 2009 and 2010

Questions