Presentation on theme: "Quality Cancer Data Saves Lives Appathurai Balamurugan, MD, MPH Section Chief, Chronic Disease Epidemiology, Arkansas Dept. of Health Assistant Professor,"— Presentation transcript:
Quality Cancer Data Saves Lives Appathurai Balamurugan, MD, MPH Section Chief, Chronic Disease Epidemiology, Arkansas Dept. of Health Assistant Professor, Dept. of Epidemiology, UAMS COPH
Overview n The Story of Jane Smith n History of Cancer registration n What does Quality Cancer Data mean? n What should we strive for? Source: CDC National Program for Cancer Registries.
Jane Smith - Unknown to Diagnosis n Jane Smith learns from her internist that she likely has a rare form of cancer
Diagnosis to Prognosis n Further tests are completed at the hospital
Prognosis to treatment n Jane’s doctor proposes a course of treatment n Unfortunately Jane’s insurance does not cover the cost since it was considered a pre- existing condition
Treatment to Registry n At 4.30 p.m on a Friday before the long holiday weekend, Ms. T, a veteran cancer registrar has difficulty in finding all the information (even non-essential items, particularly ethnicity) of Jane at her hospital records. n Ms. T’s grandson has a soccer game that evening. With competing priorities in mind, Ms. T finally decides to spend another 30 minutes to complete the required fields when she could have left the field blank. n Ms. G, a central cancer registry registrar promptly enters the data after rigorous quality control.
Registry to National Cancer Database n Jane’s data are added to Central Cancer Registry data, and the National Cancer Data Base, where it will go through more quality processes and refinement
National Cancer Database to Policy n Dr. B analyzes this rare form of cancer and finds disparity among Ms. Jane’s ethnicity and makes a recommendation to a local congressman n Congressman supports a legislation that would allow coverage for the rare form of treatment even if pre-existing. n Jane receives treatment and survives cancer, later to become an airline pilot
Cancer data saving lives n Few months later, Jane, a pilot now saves a commuter plane which had some mechanical problems, with all its 138 passengers from a crash n Among the survivors were Ms. T, Ms. G and Dr. B’s spouses!! n Surely Quality cancer data did save lives!
Cancer Information is Used to Improve Prevention, Research, and Care
Evaluate patient outcome, quality of life, and satisfaction issues and implement procedures for improvement Cancer information is used in thousands of ways, including —
National data are only as good as state and local data Health care providers record patient information and diagnosis Hospital-based cancer registrar abstracts patient information into uniform data sets and checks for an existing record for each patient Patient data are aggregated on a state level, and then sent to national registries (SEER or NPCR)
Inaccurate data are useless, expensive, and often harmful
The Cancer Registrar is a key member of health care team
n Edit the data from all facilities n Query the database for data quality reports n Merge duplicate records n Audit healthcare facilities to insure accurate, timely, complete data Registrars in Central Cancer Registries Ensure Quality Data
n Work with researchers n Contribute to data analysis for cancer program planning n Provide education and training for registrars Registrars in Central Cancer Registries Ensure Quality Data
Enhancing Data Systems to Improve the Quality of Cancer Care - IOM recommendations - n Enhance key elements of the data system infrastructure (i.e., quality-of-care measures, cancer registries and databases, data collection technologies, and analytic capacity). n Expand support for analyses of quality of cancer care using existing data systems. n Monitor the effectiveness of data systems to promote quality improvement within health systems.
Top 10 Cancer-related deaths in Arkansas and the US Source: US Cancer Statistics, www.cdc.gov
Incidence of All Cancers in Arkansas and the US, All Race and Gender, 1980- 2004 Source: www.statecancerprofiles.cancer.gov & Arkansas Central Cancer Registrywww.statecancerprofiles.cancer.gov
Top 10 New cancer diagnosis in Arkansas and the US Source: US Cancer Statistics, www.cdc.gov
Issues in our effort to conquer Cancer n Disparities in the burden of cancer n Differential access to screening, diagnosis and treatment n Behavioral factors to prevent the risk of cancer n Factors affecting cancer survival
Challenges in our effort n Non-essential items, which are critical – Tobacco use Screening tests Race/Ethnicity County/City/Zip Code
Where are we? 2004 NAACCR Data Quality Indicators n Case ascertainment – 92.2% (>95%) n Completeness of information recorded - 0.0-0.6% (< 3% (age at diagnosis, sex, race, state/county) n Death certificate only cases - 0.4% ( <3%) n Duplicate primary cases - 0.4 per 1000 (<1) n Passing EDITS - 100% (100%) n Timeliness - 23 months
Where we strive to be? Gold! Gold! Gold! n Tier 3 – NPCR n Tier 2 – NAACCR n Tier 1 - SEER
Ain’t no mountain high enough Ain’t no river wide enough To keep us from getting high quality cancer data! - NAACCR slogan -