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

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.

Jane Smith- Unknown to Diagnosis

Jane Smith learns from her internist that she likely has a rare form of cancer

Diagnosis to Prognosis Further tests

are completed at the hospital

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

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.

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

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

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!

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 —

Evaluate efficacy of treatment modalities

Provide cancer burden information for cancer surveillance

Report cancer incidence as

required by state and federal laws

Trends in Five-Year Relative Survival Rates

Calculate survival rates by various data items, such as sex, race, and age

Provide information for cancer prevention activities

Analyze referral patterns

Allocate resources at local, state, and national levels

Develop educational programs for health care providers, patients, and the general public

Cancer data forms much of the body of knowledge used by medical professionals, epidemiologists, policymakers, and public health officials

Kentucky

Thousands of lives were saved in Kentucky through early detection of breast cancer

Arizona

Careful analysis leads to broader cancer screening efforts in northeastern Arizona

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

Kansas

Cancer registry data identified a lack of cancer care facilities

New York

Cancer registry data are now used to educate New Yorkers about cancer risk factors

ArkansasArkansas Central Cancer registry data was used as a supportive evidence for the Arkansas Clean Indoor Act passed in 2006.

History of Cancer Registration

1629Cancer recorded as a cause of death

1839Death registration in the U.S.

1923First U.S. Cancer Registry launched

1932First Central State registry – Connecticut

1956ACoS CoC requires cancer programs to have registries

1971

1974Nationwide cancer registrations begins

National Cancer Act establishes SEER Program

1974NCRA Chartered

1983NCRA begins administering

CTR examination

1975ArCRA Chartered!!

1990NAACCR established

1992NPCR created by

Cancer Registries Amendment Act 1996ACoS CoC requires data

submission to NCDB

What does Quality Cancer Data mean?

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

Ensuring accuracy is a team effort

The Cancer Registrar is a key member of health care team

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

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

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.

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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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

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200

300

400

500

600

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US Arkansas

Source: www.statecancerprofiles.cancer.gov & Arkansas Central Cancer Registry

Top 10 New cancer diagnosis in Arkansas and the US

Source: US Cancer Statistics, www.cdc.gov

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

Challenges in our effort

Non-essential items, which are critical – Tobacco use Screening tests Race/Ethnicity County/City/Zip Code

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

Where we strive to be?

Gold! Gold! Gold!

Tier 3 – NPCR Tier 2 – NAACCR Tier 1 - SEER

Ain’t no mountain high enoughAin’t no river wide enough

                                                       

                   To keep us from getting high quality

cancer data!- NAACCR slogan -