quality cancer data saves lives appathurai balamurugan, md, mph section chief, chronic disease...
TRANSCRIPT
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Quality Cancer Data Quality Cancer Data Saves LivesSaves Lives
Appathurai Balamurugan, MD, MPH
Section Chief, Chronic Disease Epidemiology, Arkansas Dept. of Health
Assistant Professor, Dept. of Epidemiology, UAMS COPH
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Overview
The Story of Jane Smith History of Cancer registration What does Quality Cancer Data
mean? What should we strive for?
Source: CDC National Program for Cancer Registries.
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Jane Smith- Unknown to Diagnosis
Jane Smith learns from her internist that she likely has a rare form of cancer
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Diagnosis to Prognosis Further tests
are completed at the hospital
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Prognosis to treatment Jane’s doctor
proposes a course of treatment
Unfortunately Jane’s insurance does not cover the cost since it was considered a pre-existing condition
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Treatment to Registry 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.
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.
Ms. G, a central cancer registry registrar promptly enters the data after rigorous quality control.
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Registry to National Cancer Database
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
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National Cancer Database to Policy Dr. B analyzes this rare
form of cancer and finds disparity among Ms. Jane’s ethnicity and makes a recommendation to a local congressman
Congressman supports a legislation that would allow coverage for the rare form of treatment even if pre-existing.
Jane receives treatment and survives cancer, later to become an airline pilot
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Cancer data saving lives Few months later,
Jane, a pilot now saves a commuter plane which had some mechanical problems, with all its 138 passengers from a crash
Among the survivors were Ms. T, Ms. G and Dr. B’s spouses!!
Surely Quality cancer data did save lives!
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Cancer Information is Used to Improve Prevention, Research, and Care
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Evaluate patient outcome, quality of life, and
satisfaction issues and implement procedures for
improvement
Cancer information is used in thousands of ways, including —
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Evaluate efficacy of treatment modalities
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Provide cancer burden information for cancer surveillance
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Report cancer incidence as
required by state and federal laws
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Trends in Five-Year Relative Survival Rates
Calculate survival rates by various data items, such as sex, race, and age
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Provide information for cancer prevention activities
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Analyze referral patterns
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Allocate resources at local, state, and national levels
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Develop educational programs for health care providers, patients, and the general public
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Cancer data forms much of the body of knowledge used by medical professionals, epidemiologists, policymakers, and public health officials
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Kentucky
Thousands of lives were saved in Kentucky through early detection of breast cancer
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Arizona
Careful analysis leads to broader cancer screening efforts in northeastern Arizona
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Minnesota
In Minnesota, a rare type cancer caused by asbestos exposure was identified, leading the state to look for increased state funding for occupational-related disease
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Kansas
Cancer registry data identified a lack of cancer care facilities
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New York
Cancer registry data are now used to educate New Yorkers about cancer risk factors
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ArkansasArkansas Central Cancer registry data was used as a supportive evidence for the Arkansas Clean Indoor Act passed in 2006.
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History of Cancer Registration
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1629Cancer recorded as a cause of death
1839Death registration in the U.S.
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1923First U.S. Cancer Registry launched
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1932First Central State registry – Connecticut
1956ACoS CoC requires cancer programs to have registries
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1971
1974Nationwide cancer registrations begins
National Cancer Act establishes SEER Program
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1974NCRA Chartered
1983NCRA begins administering
CTR examination
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1975ArCRA Chartered!!
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1990NAACCR established
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1992NPCR created by
Cancer Registries Amendment Act 1996ACoS CoC requires data
submission to NCDB
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What does Quality Cancer Data mean?
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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)
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Inaccurate data are useless, expensive, and often harmful
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Ensuring accuracy is a team effort
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The Cancer Registrar is a key member of health care team
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Edit the data from all facilities Query the database for data quality
reports Merge duplicate records Audit healthcare facilities to insure
accurate, timely, complete data
Registrars in Central Cancer Registries Ensure Quality Data
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Work with researchers Contribute to data analysis for
cancer program planning Provide education and training for
registrars
Registrars in Central Cancer Registries Ensure Quality Data
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Enhancing Data Systems to Improve the Quality of Cancer Care
- IOM recommendations -
Enhance key elements of the data system infrastructure (i.e., quality-of-care measures, cancer registries and databases, data collection technologies, and analytic capacity).
Expand support for analyses of quality of cancer care using existing data systems.
Monitor the effectiveness of data systems to promote quality improvement within health systems.
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Source: www.statecancerprofiles.cancer.gov
Mortality due to All cancers in Arkansas and the US, All Gender and Race, 1980-2004
0
50
100
150
200
250
1980 1981 1982 1983 1984 1985 1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004
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U.S. Arkansas
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Top 10 Cancer-related deaths in Arkansas and the US
Source: US Cancer Statistics, www.cdc.gov
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Incidence of All Cancers in Arkansas and the US, All Race and Gender, 1980-2004
0
100
200
300
400
500
600
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US Arkansas
Source: www.statecancerprofiles.cancer.gov & Arkansas Central Cancer Registry
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Top 10 New cancer diagnosis in Arkansas and the US
Source: US Cancer Statistics, www.cdc.gov
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Issues in our effort to conquer Cancer
Disparities in the burden of cancer Differential access to screening,
diagnosis and treatment Behavioral factors to prevent the risk of
cancer Factors affecting cancer survival
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Challenges in our effort
Non-essential items, which are critical – Tobacco use Screening tests Race/Ethnicity County/City/Zip Code
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Where are we?2004 NAACCR Data Quality Indicators
Case ascertainment – 92.2% (>95%) Completeness of information recorded - 0.0-0.6% (< 3%
(age at diagnosis, sex, race, state/county) Death certificate only cases - 0.4% ( <3%) Duplicate primary cases - 0.4 per 1000 (<1) Passing EDITS - 100% (100%) Timeliness - 23 months
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Where we strive to be?
Gold! Gold! Gold!
Tier 3 – NPCR Tier 2 – NAACCR Tier 1 - SEER
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Ain’t no mountain high enoughAin’t no river wide enough
To keep us from getting high quality
cancer data!- NAACCR slogan -