ISSUE REPORT

IMPROVING CANCER TRACKINGTODAY SAVES LIVES TOMORROW:

Do States Make The Grade?

SEPTEMBER 2003

TRUST FOR AMERICA’S HEALTH IS A NON-PROFIT,

NON-PARTISAN ORGANIZATION DEDICATED TO

SAVING LIVES BY PROTECTING THE HEALTH OF EVERY

COMMUNITY AND WORKING TO MAKE

DISEASE PREVENTION A NATIONAL PRIORITY.

ACKNOWLEDGEMENTS:This report is supported by grants from The Robert

Wood Johnson Foundation and The Pew CharitableTrusts and from individual champions for improved

public health, including Joy A. Horwitz.

The opinions expressed in this report are those ofTrust for America’s Health and do not necessarily

reflect the views of the funders.

S E P T E M B E R 2 0 0 3

1

� In 2003, about 1.3 million new cancercases are expected to be diagnosed.4

� Approximately 9,000 new cases of child-hood cancer are expected among chil-dren from birth to age 14 in 2003. Whilechildhood cancer is rare, it is the chiefcause of death from disease in childrenbetween ages 1 and 14.5

� An estimated 211,300 new cases of inva-sive breast cancer will occur amongwomen in 2003. Breast cancer is themost frequently diagnosed non-skin can-cer in women.

� Approximately 220,900 new prostate can-cer cases are expected during 2003.6

Prostate cancer incidence rates forAfrican-American men are 66 percenthigher than for white men.7

� Other cancer disparities exist: The aver-age age-adjusted cervical cancer mortalityrate for white women from 1996-2000 was2.7 per 100,000. For African-Americanwomen, the rate was more than double at5.9 per 100,000. 8

Despite advances in diagnosis and treat-ment, cancer is still responsible for one ofevery four deaths in the U.S. ACS estimates,however, that one-third of cancer deathscould be prevented.9

Trust for America’s Health undertook thisreport to help create a vision for the next

generation of cancer tracking, control andprevention programs. The report specifi-cally examines the efforts of health agenciesin the states to track information about cancer and their use of this information to prevent and control the disease. First, itdescribes the importance of cancer trackingand some of the successes in the fightagainst cancer that tracking has helped toachieve. Second, it evaluates how well statesare doing in their efforts to track, controland prevent cancer, and awards grades on astate-by-state basis. The report concludeswith recommendations for how cancertracking programs should be modernized.Increased efforts made to improve andexpand prevention programs could help sig-nificantly reduce the burden of cancer onfamilies, communities and the nation.

Tracking: A Key To Winning TheWar On Cancer

State health agencies have all developedprograms to track, control and prevent can-cer. Cancer registries are the cornerstone ofefforts to track the disease. They collectvaluable information about cancer trendsthat is crucial to informing treatment andcontrol efforts. Cancer registries compilecancer data for several purposes: to advancecancer research, to develop public healthprograms to reduce cancer rates and toimprove treatment for cancer patients.

Introduction

More than 30 years after the launch of the national War on Cancer,

the disease remains the top health concern facing Americans

today.1 The American Cancer Society (ACS) estimates that more than half a

million people will die of cancer in the U.S. this year.2 Cancer costs our

nation more than $180 billion in health care spending and lost productivity

from illness and death.3 Millions of Americans are living with the disease

every day. The statistics are alarming:

2

The battle against cancer involves manypeople: health care providers, physicians,researchers, epidemiologists, public healthofficials, legislators and communities. All ofthese individuals rely on registry data todevelop and evaluate prevention and treat-ment strategies.10

Cancer registries in 40 states and theDistrict of Columbia are housed in publichealth departments. In the other 10 states,cancer registries are housed in academicinstitutions. Both the federal and moststate governments provide funding for can-cer registries.

“Health tracking” is the monitoring of dis-ease rates. The information compiled isessential for understanding and identifyingpotentially preventable causes for diseases,learning who is at risk and developing pre-vention strategies. Currently, there is nonationwide system in place to track cases ofmost chronic diseases, like diabetes, asthmaor Parkinson’s. However, the cancer

research community has been a nationalpioneer in recognizing the importance ofdisease tracking. Today, all 50 states and theDistrict of Columbia have cancer registryprograms.

Many of America’s cancer registries tracetheir origins to the Connecticut TumorRegistry, which was established in 1935.Other states, as well as some cities andcounties, gradually followed course, withmany funding their registries through stateor local public health departments. Ratherthan functioning in concert with publichealth programs, cancer registries histori-cally collaborated more closely with sur-geons and other physicians who treat can-cer patients. As a result, cancer registriestraditionally have focused on a clinicalapproach to battling cancer, which is basedon treatment of patients once they havebeen diagnosed.

In 1972, the National Cancer Institute( N C I ) l a u n c h e d t h e S u r v e i l l a n c e ,

Through “health tracking,” cancer control expertscollect and analyze information about cancercases, including whom the disease strikes, the typeof cancer and severity at the time of diagnosis.This information is vital to fighting the disease withprevention programs, early detection such asscreenings and treatment. While cancer trackingin this country can be improved, it has helped savelives and reduce health care treatment costs.

Unfortunately there is no nationwide healthtracking network in place for other chronic diseases, such as diabetes and heart disease.Yet the national cost of chronic disease is staggering: four out of five deaths each year and cost $750 billion in annual health carespending and lost productivity. While the U.S. health care system excels at treating disease, we lack an understanding of chronicdiseases that a national tracking system could

provide. This is crippling our ability to reduceand prevent chronic disease and help Americanslive longer, healthier lives.

The U.S. needs a Nationwide Health

Tracking Network to improve our ability to:

• Guide intervention and prevention strategies,including lifestyle improvements,

• Identify, reduce and prevent harmful risks,

• Improve public health policymaking, and

• Track progress toward achieving a healthier nation.

The Nationwide Health Tracking Network wouldbe administered by Centers for Disease Controland Prevention (CDC). Congress appropriated$17.5 million in FY 2002 and $28 million in FY2003 to begin such a network.

HEALTH TRACKING: U.S. NEEDS A NATIONWIDE SYSTEM NOW

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Epidemiology and End Results (SEER)program under the National Cancer Act.This law mandated the collection, analysisand dissemination of data useful for theprevention, diagnosis and treatment ofcancer. The SEER program currentlycomprises nine statewide and six regionalcancer registries. For three decades,SEER has served as a valuable source fornational cancer incidence and survivaltrends and an important resource forresearching the causes and most effectivetreatments for cancer.11

To further expand the scope of the reg-istries, including adding an increased focuson prevention activities, Congress passedthe Cancer Registries Amendment Act in1992. The law was later reauthorized in1998 and is expected to be reauthorizedagain in 2003. It provided significant feder-al funds to the CDC’s National Program ofCancer Registries (NPCR) to support exist-ing state cancer registries and to help estab-lish registries in states without them. NPCRalso required standardized data elementsand reporting guidelines that registries wererequired to follow in order to receive feder-al funds. Funding for the program has

grown from $16.8 million in 1994 to $45.6million in 2003.

According to CDC, “cancer registries col-lect information about the occurrence(incidence) of cancer, the types of cancersthat occur and their locations within thebody, the extent of cancer at the time ofdiagnosis (disease stage), and the kinds oftreatment that patients receive.”12 CDC alsostates that the registries they fund should bedesigned to:

� Monitor cancer trends over time,

� Determine cancer patterns in variouspopulations,

� Guide planning and evaluation of cancercontrol programs (e.g., determine whetherprevention, screening and treatment effortsare making a difference),

� Help set priorities for allocating healthresources,

� Advance clinical, epidemiologic, andhealth services research, and

� Provide information for a national data-base of cancer incidence.

Most states are facing the worst fiscal crises in decades, with a collective shortfall of up to $85 billion. Cancer registries have been impactedby these budget woes and often do not have the resources required to do their jobs in the most effective way possible. When states makespending decisions, the importance of registriesfor controlling and preventing cancer is oftenoverlooked.

In the state of Texas, for example, the cancerregistry narrowly escaped being “zeroed-out” inthe state budget for 2004-2005, as the legisla-ture struggled to reduce its $10 billion deficit.Fortunately, the cancer registry was preserved.

However, it did suffer nearly a 10 percent budget cut for 2004-2005. This cut is furtherstraining the state’s ability to track cancer andits effort to obtain a nationally certified cancerregistry. For instance, Texas has a current back-log of 25,000 cancer case records that must beprocessed. The budget cut will make it evenharder to reduce the backlog. In addition, withless funding, plans to enhance data collectionfrom outpatient facilities and physician officeswill be severely impeded. The Texas registryneeds additional staff and resources to addressthe backlog and continue its efforts to enhancedata collection.

FISCAL PRESSURE ON STATES: WILL IT COST LIVES?

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In February 2000, CDC and NCI signed aMemorandum of Understanding (MOU) toestablish formal collaboration between NCI’ssurveillance research programs and CDC’sNPCR. The MOU seeks to better coordinatenational cancer surveillance efforts byimproving the availability of high-quality data,and advancing the capacity for surveillanceresearch. For the first time ever in 2002, CDCand NCI published a national report, UnitedStates Cancer Statistics: 1999 Incidence. The

report contains federal government cancerstatistics for more than one million invasivecancer cases diagnosed during 1999 amongresidents of 37 states, six metropolitan areasand the District of Columbia.13

The information collected by cancer reg-istries can be used by a range of offices within state health agencies and by otherresearchers to develop public health initia-tives to reduce cancer rates.

The cancer trends revealed by tracking the dis-ease have resulted in numerous advancementsin treatment and prevention, such as cancerdetection and screening programs. Finding thedisease at the earliest stages provides moreopportunities for effective treatment optionsand increases patients’ chances for survival.Some examples of how registries have made adifference include:

� The Connecticut Tumor Registry identifiedan epidemic of lung cancer in women in1977.14 These findings provided importantdata about the connect ion between smoking and lung cancer. This resulted inincreased efforts to raise awarenessthrough public health programs about thehealth impacts of smoking.

� In Canada registry data informed the devel-opment of more effective cervical cancerscreening guidelines, including improvedrecommendations about the age and fre-quency at which women should bescreened. These updated screening guide-lines help doctors detect cervical cancerearlier, when it can be more successfullytreated. As a result, death rates due to cer-vical cancer have decreased steadily.15

� The Kentucky registry was able to help save livesand millions of dollars in cancer treatment costs.In the early 1990s, 35 percent of women diag-nosed with breast cancer in that state were inthe late-stage of the disease, for which the sur-vival rate is low. Registry data was used to iden-tify areas of the state that had high rates of late-stage and low rates of early-stage breast cancer.With additional funding from the CDC, the stateexpanded mammography outreach activities inthese communities. In 1996, the percentage ofwomen in the state diagnosed with late-stagebreast cancer had declined to 30 percent. Inaddition to the potential lives saved, detectingthese cancers earlier also saved an estimated$4.7 million in treatment expenditures.16

� Cancer registr ies provide subjects forresearch studies that lead to primary prevention efforts. State cancer registries in Maine, New Hampshire, Massachusetts andWisconsin participated in a study publishedin 1995 that found increased risk of breastcancer with increasing lifetime consumptionof alcohol.17 This and similar studies revealedthat reducing excessive alcohol consumptionis an important factor in reducing a woman’srisk of developing breast cancer.

SOME SUCCESSES

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Good data is critical, but ensuring the datais well used will save lives. In this report,Trust for America’s Health (TFAH) focusedon examining not just states’ performancein compiling quality data, but also on howwell the states use and apply this data toimprove their cancer prevention and con-trol programs. This added a new dimensionto existing quality standards by analyzing ifand how the information compiled helpsinform prevention strategies and initiatives.

TFAH developed a grading system to deter-mine how well states performed on criteriain four categories. NAACCR’s and NPCR’sdata-quality criteria were used in conjunc-tion with additional criteria to evaluate howthe data is being used and applied to betterunderstand risk factors and possible causesof cancer. The categories include:

1. Data Quality– the accuracy, completenessand timeliness of data cancer registries col-lect on individuals diagnosed with cancer.

2. Data Linkage and Data Availability–whether states are using the data fromcancer registries to link to other availablehealth information sources. The criteriaalso measure states’ performance in mak-

ing data available for research to deter-mine whether specific behavioral andlifestyle factors, such as diet and exercisehabits, or environmental factors such assecond-hand smoke, certain viruses andpollutants, affect people’s risk of develop-ing specific cancers.

3. Community-Level Answers– how well thestate provides data at the neighborhoodlevel to answer community questionsabout cancer rates, while protecting theconfidentiality of cancer patients.

4. State Legislation– the state legislative andregulatory efforts to create and maintaineffective cancer registries.

This survey of state health agencies was con-ducted from November 2002 throughFebruary 2003. The cancer registries werethe point of contact for the states’ response.The survey asked states to report their pro-ficiency on 36 standards.18 These standardswere grouped into the four categoriesdescribed above. Designed to measure stateperformance, the standards drew on threesources: 1) NAACCR, 2) NPCR and 3)TFAH. (For a description of grading crite-ria, see Appendix A).

How Well Are StatesTracking Cancer?

State cancer tracking efforts traditionally have been evaluated by the

North American Association of Central Cancer Registries (NAACCR).

NAACCR, established in 1987, is a collaborative umbrella organization for can-

cer registries, governmental agencies, professional associations and private

groups in North America interested in enhancing the quality and use of cancer

registry data. The organization annually reviews member registries for their

ability to produce complete, accurate and timely data. The registry certification

program then recognizes those registries meeting the highest standards of data

quality with “gold” or “silver” award certificates for each data year.

6

States were awarded points based on theirperformance on the 36 standards. The totalpoints a state received in each category were weighted, and then overall grades werecalculated. Data Quality, including accuracy,completeness, and timeliness comprised50% of the total grade. This was weightedmost heavily because it is critical to ensurethat information is accurate before it is dis-seminated and used as the basis for publichealth initiatives. The Data Linkage andData Availability and Community-Level Answerscategories were each weighted as 20% of thegrade. State Legislation, was weighted thelowest at 10% since adequate regulationsand laws already exist in most states

Percentage scores were translated into lettergrades as follows: 90-100% = A; 80-89% = B;70-79% = C; 60-69% = D; and below 60% = F.

NEW JERSEY: Cancer registry data canhelp determine whether a community haselevated rates of cancer and suggest thereasons for this increase. In 1995, the NewJersey Department of Health and SeniorServices (NJDHSS) responded to citizens’concerns that there was an elevated rate ofchildhood cancer in Dover Township,located in Ocean County, NJ. Using datafrom the New Jersey cancer registry, healthofficials discovered that the incidence ofchildhood cancer in Dover Township wassignificantly higher than would normallybe expected when compared with the restof the state. Leukemia and brain and cen-tral nervous system cancer rates were par-ticularly elevated and the excess seemed tocluster in a particular section of DoverTownship called Toms River. This prompt-ed the NJDHSS and the U.S. Agency forToxic Substances and Disease Registry

(ATSDR) to begin an epidemiologicalstudy in 1997 to examine the potentialexposures associated with the elevatedchildhood cancer rates.

The investigation found that girls frombirth to age 19 were five times more likelyto have leukemia if they were exposed inutero to well water which had been con-taminated with the solvent trichloroethyl-ene and other chemicals leaking from anearby hazardous waste site. Childrenwho drank well water from contaminatedgroundwater areas or who lived near awaste pipe from Ciba-Geigy Corporation’snow closed Toms River manufacturingplant were far more likely to developleukemia. This is a strong example of how registry data can be used to addresspublic concerns about the health of acommunity.34

C A S E S T U DY

Data Quality50%

Community-LevelAnswers

20%

Data Linkageand Availability

20%

StateLegislation

10%

STATE GRADES: Category Weights

7

The top five performing states overall were California, Colorado, Massachusetts,Washington and Wyoming.

The report found that, while most states areperforming well, particularly in maintaininghigh-quality cancer data, there is generallyroom for improvement when it comes tousing the information to improve preven-tion efforts in two specific areas:

� First, many states do not conduct ade-quate linkages to other sources of avail-able information, such as occupationaland behavioral studies. This information

would help public health officials identifyand develop initiatives focusing on riskfactors and possible causes of cancer.

� Second, state performance in providinginformation about cancer rates at theneighborhood level is mixed. Providingthis information to communities is impor-tant when it comes to answering the pub-lic’s questions about possible disparitiesin cancer rates among different localitiesand ethnic groups.

These two areas will be addressed further inthe next section of the report.

NEW YORK: As part of New York’s Cancer Surveillance Improvement Initiative(CSII), the New York State Cancer Registryis improving the way information about can-cer is conveyed and disseminated to thepublic. Using cancer registry data alongwith state-of-the-art mapping techniques,the New York State Cancer Registry’s Web site maps cancer rates by zip code

throughout the state. The CSII also is plan-ning to use maps to display the distributionof cancer risk factors by zip code through-out the state. These tools allow the public tobegin to answer questions and concernsabout cancer in their communities usingreadily available online information fromthe cancer registry.31

C A S E S T U DY

State-By-State Grades

Thirty-four states and the District of Columbia participated in TFAH’s

survey, representing 71 percent of the U.S. population. Sixteen states

either declined to participate or provided insufficient information to be eval-

uated. Of the participants, 12 received an A, 16 earned a B, and three

received a C. Three states earned a D and one state received an F. (See Map,

State-by-State Grades).

8

Of the 34 states and the District of Columbiathat responded to TFAH’s survey, 30 have atsome time linked cancer registry data withother sources of information to better under-stand risk factors associated with cancer rateswithin a specific population. However, onlyeleven states – Arkansas, California,Colorado, Illinois, Massachusetts, Oklahoma,Texas, Washington, West Virginia, Wisconsinand Wyoming — have ever linked their can-cer data with all of the following types of data:

health-related behavioral/lifestyle, occupa-tional and environmental.

When cancer registries conduct “data link-ages” – combining cancer data with otherdatabases – the combination identifies oppor-tunities for cancer risk reduction. Twenty-seven cancer registries surveyed report thatinstitutional constraints, including inadequatefunding and staffing levels, limit their ability toperform data linkages on a routine basis.There are a number of basic data linkage stud-

A B C D F N/A

California Alaska Alabama Maine Mississippi ArizonaColorado Arkansas Montana North Dakota ConnecticutIdaho Delaware Virginia Tennessee19 HawaiiIllinois District of Columbia IowaMaryland Florida KentuckyMassachusetts Georgia LouisianaMichigan Indiana MinnesotaMissouri Kansas New JerseyOregon Nebraska New MexicoPennsylvania Nevada New YorkWashington New Hampshire North CarolinaWyoming Oklahoma Ohio

Rhode Island South CarolinaTexas South Dakota20

West Virginia UtahWisconsin Vermont

STATE CANCER TRACKING GRADES

Life-Saving Links Not Maximized

9

ies that could be conducted more routinely tohelp enhance cancer tracking. Improved link-age efforts could positively impact:

� Enhancing Data Quality and TreatmentOptions. According to the CDC, linkingregistry information to other sources canhelp to enhance the data collected. Forexample, most registries do not routinelycollect information about other healthissues a patient might have, such as heartdisease, which can affect treatmentoptions, or details about a treatmentcourse, such as type of chemotherapy.Linkages with Medicare and health insur-ance claims databases can provide thisimportant information.

� Identifying Risk Factors. Conducting datalinkages also can help identify opportuni-ties for cancer-risk reduction. Linking reg-istry data with information on lifestylebehaviors like diet, or environmental fac-

tors such as certain viral agents, or pollu-tants, can help better target cancer preven-tion efforts. For instance, environmentalfactors, including second-hand smoke,some pollutants, and viral agents such ascertain types of human papillomavirus(HPV), have been linked to cancer.

� Development of Prevention Initiatives.For example, several states have linkedinformation about low rates of mammog-raphy screening with later-stage cancerdiagnosis rates. Through such a study,Kentucky was able to target mammogra-phy screening outreach efforts and reducethe rates of late-stage breast cancer.21

� Reducing Health Disparities. Linkagesallow for the development of strategies tohelp target and reduce health disparities,such as differences in cancer rates withincommunities, socio-economic status, occu-pations, age ranges and ethnic groups.

Medical information is among the most sensitiveand personal information collected. Privacy is alsocentral to the doctor-patient relationship. Toprotect medical privacy, the U.S. Department ofHealth and Human Services (HHS) issued regu-lations known as the “Privacy Rule.” Congressgave HHS the authority to issue the rule in theHealth Insurance Portability and AccountabilityAct of 1996 (HIPAA). The Privacy Rule definesadministrative policies and procedures to safe-guard patients’ personal, private health informa-tion. It went into effect for most health organi-zations in April 2003.

The Privacy Rule aims to empower patients byguaranteeing them access to their medicalrecords, giving them more control over the useand disclosure of their health information, andproviding recourse if their medical privacy iscompromised. A central feature of the rule isthe informed consent provision, which specifiesthat a health organization cannot disclose pri-vate health information without the written,informed consent of the patient.

At the same time, the rule also recognizes theimportance of public health surveillance, includ-ing cancer tracking conducted by cancer reg-istries. Consequently, the Privacy Rule general-ly exempts cancer registries from the informedconsent requirement. Health organizationscovered under the rule must, however, maintaina log of private health information disclosures tocancer registries. This requirement preservesthe patient’s right to review an accounting ofthe disclosures of their private health informa-tion over a period of time, generally six years.27

All states have enacted laws requiring the confi-dentiality of cancer registry operations. The lawsprotect the identity of cancer patients and thesources reporting to the registries. CDC’sNational Program of Cancer Registries (NPCR)also requires the protection of patient confiden-tiality. Together, state laws, NPCR requirementsand the federal Privacy Rule strive to achieve abalance between safeguarding patient confiden-tiality and enabling cancer tracking to prevent andcontrol disease.

PROTECTING PATIENT CONFIDENTIALITY

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� Identifying At-Risk Communities. Forinstance, linking water-quality data tocancer rates in neighborhoods mayyield insights about the potential forwater contamination to be associatedwith elevated cancer rates and the pos-sible value of reducing exposures infuture generations.

� Informing Policy Priorities for Treatmentand Control Efforts. Systematically link-ing cancer data with Medicare andMedicaid could provide important infor-mation for establishing priorities for can-cer treatment and control policies andresource allocation.

According to the TFAH survey, a number ofstates have shown how data linkages can beused to break new ground to better under-stand the obstacles to cancer reduction andtreatment:

� Illinois linked cancer data to hospital dis-charge data to explore whether or notinsurance status is associated with stage ofcancer at time of diagnosis.

� Nevada linked cancer registry data toemergency room data to help deter-mine the cost of cancer treatment andto evaluate the financial burden of can-cer in Nevada.

� Oregon linked cancer registry data toMedicaid data to study cancer in the dis-abled Medicaid population, includingthe degree to which inadequate cancercontrol services among people with dis-abilities results in higher risk for pre-ventable cancers and for diagnosis atlater stages.

� Colorado linked cancer registry data withMedicare data to evaluate quality of carereceived by the elderly with breast and/orcolorectal cancer.

� Seventeen states, including Maryland,New Hampshire, Pennsylvania andWyoming, have linked cancer registrydata with the Behavioral Risk FactorSurveillance Survey (BRFSS) to under-stand issues such as how the use ofscreening services varied by differenttypes of cancer.22

Some ethnic minority groups and individuals liv-ing in poverty are more likely to become ill anddie from cancer at rates that are higher thanthe rest of the population. For example:

� The number of new cases of invasive cancerper year from 1996-2000 was 521.7 forAfrican-Americans and 479.8 for whites per100,000 people.

� African-American men experience the high-est incidence rates of lung and bronchial can-cer, 120.4 per year per 100,000 males versus79.4 for whites.

� Asian/Pacific Islanders have a liver cancerrate that is nearly three times as high aswhites and a stomach cancer rate that ismore than double that of whites.

� Hispanic/Latina females experience the highestincidence rates for cervical cancer, 16.8 per yearper 100,000 females compared to 9.2 for whites.28

According to the Institute of Medicine, individualsliving in poverty often lack health insurance oraccess to high-quality cancer care and typicallyexperience high cancer incidence and mortalityrates and low rates of survival.29

Cancer registry data can help public health offi-cials create targeted programs that seek toreduce the number of cancer cases and cancerdeaths. For example, analysis of cancer registrydata can increase understanding of the factorsthat contribute to breast cancer severity amongAfrican-American women at the time of detec-tion, which can lead to improved survival rates.Understanding these factors can help publichealth officials design outreach programs forAfrican-American women that encourage themto seek mammography screening earlier, whentreatment options may be more effective.

THE KEY TO LOWERING DISPARITIES

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� Twenty-one states, including Idaho,Massachusetts, Texas, Florida, andGeorgia, have linked registry data withenvironmental databases to explore asso-ciations between cancer cases and air pol-lution, water contamination and potentialexposure to hazardous waste sites.

� Sixteen cancer registries, includingArkansas, Illinois, Michigan, Oklahomaand West Virginia, have linked cancerdata with occupational rosters to help

highlight possible exposures to cancer-causing agents in the work environment.

Data linkage studies can involve a widerange of potential analyses with varyingamounts of personnel and computer time toconduct them. Currently, NPCR and stategovernments do not provide adequateresources for many state health agenciesand registries to conduct the data linkagesthey would like to undertake. Registries use

Cancer is a chronic disease that may be initiat-ed decades before the diagnosis is made, butthat time lag does not exist in childhood can-cers. For example, prenatal X-ray exposure hasbeen shown to increase the risk of childhoodleukemia within a few years of birth. In somecommunities, such as Woburn, MA, and Tom’sRiver, NJ, there was an excess of childhoodleukemia in children whose mothers wereexposed to contaminated well water while preg-nant. For these reasons, it is desirable to exam-ine childhood cancer patterns as rapidly as pos-sible to see if unusual numbers are occurring incommunities that may warrant further investi-gation and preventive action.

Real-time reporting of childhood cancer has beenproposed by a citizen group in Tom’s River, NJ,where a significant excess of childhood leukemiaand brain cancer was first noted by the group andconfirmed by the state cancer registry. In stateswith large populations, the hospital where a childis first diagnosed could transmit information elec-tronically, with adequate privacy protection, tothe state cancer registries. This would meanalmost “real-time” reporting of the case. Thehospital subsequently would report additionalinformation to supplement the initial data it sent.Real-time reporting requires modernizing to takeadvantage of the latest available technology inelectronic reporting systems. NPCR has called forelectronic reporting for several years. NAACCRalso has recognized the importance of movingtoward electronic, real-time case reporting. 30

With initial diagnostic information and minimalinformation, such as age at diagnosis and residentialaddress, state cancer prevention staff could“screen” the data periodically to look for emergingpatterns. This would require cooperation from thepediatric hospitals where a patient is first diagnosedand some additional state cancer registry personneltime, depending on the size of the state, but wouldinclude less than 10 percent of the statewide can-cer cases (the approximate percentage of cancercases that occur in children). Such a system wouldallow for rapid review of these cases to see if unusu-al new patterns emerge. Later, the full data on eachchildhood case, including first course of treatmentand related clinical data could be added to enhancedata completeness. Real-time reporting of

childhood cancer would provide the potential

for early evaluation and intervention to pre-

vent exposures and would respond to citizens’

special concerns about childhood cancer.

In addition, real-time reporting for children couldserve as a model for rapid reporting of adult can-cer cases. With the use of new technologies,rapid reporting has become common in other pub-lic health initiatives. The CDC and some localcommunities have demonstrated this type ofreporting in their tracking of West Nile Virus andsevere acute respiratory syndrome (SARS).Though cancer is not an acute infectious disease,a modern registry system could and should devel-op additional procedures to compile useful datarapidly for immediate reporting once a case ofcancer is accurately diagnosed.

REAL-TIME AND RAPID REPORTING

12

their resources to focus first on collectingand compiling high-quality data – linkagesare a lower priority. Often there is too littlefunding to hire enough staff to create datalinkages, which can be labor-intensive.Increased funding for data linkages shouldbecome a top priority for NPCR and thestates, even though state and federal gov-ernments are facing significant deficits.Given that the nation spends more than$180 billion on treatment and lost produc-tivity due to cancer, investment in data link-ages could help prevent new cases of cancerin the future, decrease the number ofdeaths from cancer and potentially savehealth care dollars.

At a meeting hosted by CDC/NPCR, cancerregistry experts recognized the need toincrease the value and utility of registrydatabases for cancer prevention and controlby improving the linkages to other databas-es, such as geographic information systems(GIS) and census data.23 By incorporatingdata linkages into routine cancer registryoperations, public health programs can bet-ter target limited resources to:

� Modify policies and programs to improvepreventive measures,

� Target populations for interventions,

� Provide information about risk factors, and

� Evaluate current activities.

Many Community-Level QuestionsGo Unanswered

TFAH’s study examined the performance ofstates in providing community-level datathat can answer the public’s andresearchers’ questions about disparities incancer rates among different neighbor-hoods and ethnic groups. Of the 34 statesand the District of Columbia that respondedto TFAH’s survey, only 14 reported that theyprovide data at the neighborhood level.More than half the states participating inTFAH’s survey do not provide informationat the community level, typically due to lim-ited funding and resources.

Each year, more than a thousand communi-ties or individuals raise concerns to theirhealth departments about their neighbor-hoods’ cancer rates.24 Often these commu-nities suspect they are experiencing a “can-cer cluster.” A higher-than-expected numberof cancer cases in a certain geographic areaover a defined period of time within a spe-cific group of people is considered to be acluster. Cancer clusters tend to be contro-versial because of the many challenges fac-ing cluster investigations - politics, percep-tions, statistical chance and limitations of sci-ence. Rarely do investigations result in theidentification of true cancer clusters.25

These questions and concerns can only beproperly addressed, and in most cases put

CALIFORNIA: California is one ofAmerica’s leaders in cancer tracking. Dueto the size and diversity of California’s population, more is known about theoccurrence of cancer among diverse popu-lations than in most other states. A tradi-tion of complete and accurate data hasallowed California data to be used in hun-dreds of research investigations. For exam-ple, from 1988 through 1999, the CaliforniaCancer Registry studied the incidence ofcancer among members of the United

Farmworkers of America (UFW), a largelyHispanic farm worker labor union.Results showed that the risk of leukemia,stomach, cervical and uterine cancers waselevated in California farm workers. UFWmembers also experienced later stage ofdisease at diagnosis than other CaliforniaHispanics for most major cancer sites.Additional research into the potentialcauses of this increased risk for certaincancers is planned, including a study offarm workers’ exposure to pesticides.32

C A S E S T U DY

13

to rest, by providing information about can-cer rates at a neighborhood level. The pub-lic should be able to obtain cancer registrydata in two ways: by reviewing publishedannual reports or by asking states for itdirectly. In reality, neither approach guar-antees that the public and researchersreceive information specific enough to beable to adequately address their questionsat a neighborhood level.

States’ annual reports provide statewide can-cer rates and sometimes publish rates at small-er geographic levels, such as by county, city ortown. Typically, however, data specific toneighborhoods is only available when specialrequests are made by the public. Theserequests are often prompted by concerns thatthere may be a potential cancer cluster. TheTFAH survey found that 21 of the 34 statesand the District of Columbia surveyed do notmake neighborhood-specific data available tocitizens requesting it. In addition, of the 14states that do provide neighborhood-leveldata to citizens, 12 states publish breakdownsof cancer cases by age, sex and race, but twodo not. Many cancer-tracking experts pointout that very high-quality control standardsshould be met before data is made availableto the public, to ensure that communities arereceiving and relying on information that is asaccurate as possible.

All of the states have patient privacy laws thatrequire them to limit the availability of data

at the neighborhood level. Accordingly,some states have developed policies allowingdata to be released at any geographic levelunder certain conditions. For example, sev-eral states allow aggregate data to bereleased at a small geographic level, as longas it contains more than five cancer cases.The experience of cancer registries in othercountries demonstrates that confidentialitycan be protected while tracking cancer with-in specific communities and providing suchdata to citizens at a geographic level smallenough to answer their questions.26

TFAH’s survey found that all states butRhode Island had written cancer clusterinvestigation protocols. These protocolsare important to the public because theyestablish formal rules that describe if,when and how a state will act to investigatea possible cancer cluster. Cancer registriesprovide state health officials with a meas-ure as to whether the observed incidenceof cancer is elevated for a specific timeperiod. In addition, they also can providea statistical estimate as to whether ‘chance’can be excluded as a competing explana-tion for the occurrence of the cancer clus-ter. If there are indications that there area statistically significant greater number ofcases, then the health department may ini-tiate an investigation, depending on thewritten protocols.

OREGON: Before the 1992 CancerRegistries Amendment Act, Oregon was oneof the many states lacking a statewide cancerregistry. With the help of national funds,Oregon has achieved the nation’s higheststandards in data quality and completenessin only a few years of operation. The registry is now producing comprehensive

summary data reports and using the databoth internally and in collaboration withexternal researchers. For example, data isbeing used to document the degree towhich inadequate cancer control servicesamong people with disabilities results inhigher risk for preventable cancers and fordiagnosis at later stages.33

C A S E S T U DY

14

State cancer tracking, prevention and controlprograms are critical to winning America’sWar on Cancer. They seek to reduce illnessand death due to cancer, and have achievedsome real success. States have used cancertracking data to save lives by improving cancerscreening guidelines and developing publichealth programs that have reduced people’srisk of developing and dying from cancer.

Yet states can do more. Many states couldenhance their data tracking efforts to helpreduce cases of cancer that could have been pre-vented altogether. Many states need to worktowards expanding their data linkages to otherdatabases. This would accelerate the pace ofvaluable discoveries of the factors that contributeto cancer and identify groups who are at risktoday. Most states also need to improve effortsto provide information that helps answer com-munities’ questions about cancer rates in theirneighborhoods. While budget pressures loom,cancer tracking and control must be funded adequately at the state and federal levels.

In order to modernize cancer tracking, pre-vention and control programs in the U.S., anew, concerted commitment is required toensure that states are able to:

1) Conduct data linkages to combine reg-istry data with other sources of informa-tion essential to cancer prevention,including lifestyle and behavior factors,and environmental data, such as certainviruses and pollutants;

2) Develop community-friendly practices,which help answer the public’s questionsabout cancer rates in their neighbor-hoods, while maintaining the confiden-tiality of individuals;

3) Implement real-time reporting for child-hood cancer and rapid reporting foradult cancer; and

4) Continue high standards for data quality.

State cancer tracking programs have beensuccessful at providing information thatimproves “secondary prevention” — cancerscreening and early detection. However,many states are falling short in efforts to usethe information they collect to help reducecases of cancer that could be prevented alto-gether. Identifying factors that place indi-viduals or communities at risk for develop-ing cancer and working to reduce those fac-tors in order to lower that risk is called “pri-mary prevention.”

An example of primary prevention thatstates could undertake is to link data on pat-terns of environmental behavior, such astobacco exposure, diet or exercise, to dataon cancer rates. Given current resources,many states do not include such data link-ages for primary prevention among theirongoing or regular cancer tracking activi-ties. Yet such linkages have the potential tobecome an even more effective tool in thefight against cancer by expanding theirfocus to include more efforts to stop new,preventable cases of cancer from occurring.

Reducing preventable cases of cancer andincreasing cancer screening rates couldpotentially reduce health care spending overtime for health care consumers, includingthe federal and state governments, as well asemployers. More important, advancementsin understanding and improving cancer prevention can result in reduced illness andcountless lives saved.

CONCLUSION:

A Vision for 21st-CenturyCancer Tracking

15

The results of TFAH’s survey suggest a seriesof actions for policymakers to consider withrespect to modernizing America’s cancertracking system to help fight, and ultimatelywin, the War on Cancer.

1. Expand data linkage activities. Cancer track-ing data can be linked with other sources ofhealth information to provide importantinformation and insights. The use and appli-cation of cancer data is critical to determin-ing cancer excesses in specific populationsand enhancing both primary and secondaryprevention efforts. As a condition of federalsupport, states should work in conjunctionwith the CDC and researchers to identifyappropriate linkage studies.

2. Provide additional funding for cancer track-ing. Although federal and state budgets areunder pressure, additional funding fromboth of these levels of government is crucial.Funding NPCR at $65 million, an increase ofapproximately $19 million, would help mod-ernize cancer tracking. Spending money ontracking can save health care expenditures,and more important, save lives. Cancertracking should also be integrated into acomprehensive Nationwide Health TrackingNetwork administered by the CDC designedto monitor chronic diseases.

3. Make data available to the public while pro-tecting patient confidentiality. States shouldactively work to make community-level cancerdata easily accessible and available to the pub-lic and researchers. Health agencies in thestates should also adopt policies that allowthem to provide information at a neighbor-hood level that guard patient confidentiality.

4. Improve reporting time. Within five years,all registries should set the goal of achievingreal-time reporting for childhood cancers.Cancer is a chronic disease that may be initi-ated decades before the diagnosis is made,but that time lag does not exist in childhoodcancers. State public health departments

should examine childhood cancer patternsas rapidly as possible to see if unusual num-bers are occurring in communities that maywarrant further investigation and preventiveactions. Moreover, real-time reportingcould potentially contribute to time-sensitivecancer treatments and research activities.Real-time reporting for childhood cancercould serve as a model for eventually estab-lishing rapid reporting for adult cancers.

5. Strengthen public accountability andenforce performance standards. Standardsfor data quality and timeliness are importantfirst steps in improving cancer registry dataand programs. However, nationally sanc-tioned standards do not exist to guide states’policies and practices regarding data link-ages and response to public concerns. Toestablish such standards and methods fortracking progress on an ongoing basis,NAACCR and NPCR should work directlywith researchers and community groups.NPCR has worked hard to assist registries,but it must exercise stronger leadership tomotivate steady improvement. Should theseorganizations fail to prepare adequate stan-dards in these areas, Congress should man-date NPCR set standards on data linkagesand response to public concerns for all reg-istries receiving federal support..

6. Institute of Medicine (IOM) should con-duct a study on the federal role in cancerregistries. Congress should direct the IOMto conduct a review of the existing, bifurcat-ed registry system in the U.S. The NationalCancer Institute and the CDC separatelyfund cancer registries. Both programsserve important purposes, but maintain dis-tinct goals and missions. Progress has beenmade toward coordinating these major pro-grams, yet obstacles remain. The IOMshould examine the respective SEER andNPCR programs and make recommenda-tions that will guide development of a seam-less cancer tracking system in the U.S.

Recommendations For Action

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Appendix A: DESCRIPTION OF THE GRADING CRITERIA

Data Quality

Nineteen criteria were used to assess data qual-ity. All but one of the criteria have been used byCDC’s National Program of Cancer Registries(NPCR) to evaluate the first five years of theirprogram.35 Nine of the 19 criteria are used bythe North American Association of CentralCancer Registries (NAACCR) in their registrycertification program.36 Where NPCR andNAACCR criteria were the same, TFAH usedNAACCR’s criteria when assigning points.Criteria derived from NAACCR standards werescored using a 3-point system. A state scored 0points if it performed below NAACCR’s “silver”level, 2 points if it performed at NAACCR’s “sil-ver” level and 4 points if it performed atNAACCR’s “gold” level. Criteria based onNPCR’s standards were scored using a 2-pointsystem. A state scored 0 points if it did not meetthe NPCR criteria and 1 point if it did meet thecriteria. Scores on each criterion were addedtogether to create a category-specific grade.

The Data Quality scoring method assignedmore weight (more points) to NAACCR crite-ria to account for the relative value and impor-tance of the NAACCR registry program as anindicator of state cancer registries’ perform-ance with regard to data quality, completenessand timeliness. In addition, the scoring systemtranslated NPCR’s and NAACCR’s non-numer-ic evaluation procedures into comparablenumeric values. This study used NAACCR’s listof silver- and gold-certified states for 2000 inci-dence data to validate the Data Quality gradingsystem and to ensure accurate reporting by thestates. The Data Quality grades will differslightly from NAACCR’s certification resultsdue to the differences in scoring methods andthe inclusion of additional criteria from NPCR.

Data Linkage and Availability

TFAH established four criteria to assesswhether state cancer registries or other statehealth department programs:

� Link cancer data with other individualand/or population-level databases to pro-vide enhanced health tracking;37 and

� Implement an NPCR standard mandatingthat state cancer registries have proceduresallowing public health researchers access toconfidential case information. Note thatsome state laws prohibit access to confiden-tial case information, and NPCR standardsdo not supercede state law. Some stateschoose to make their data available in pub-lic use databases, which can meet the needsfor cancer control planning, but may notmeet the needs for all types of research.This is not ideal from the cancer researchand prevention standpoint.

Performance on each criterion in this catego-ry was scored using a 2-point scoring system.A state received 1 point if it had such proce-dures in place and 0 points if it did not. Scoreson each criterion were added together to cre-ate a category-specific grade. To get an “A” inthis category, states had to receive the maxi-mum possible points on every standard.

Community-Level Answers

TFAH established four criteria to evaluate howwell states provide information about cancerrates at a neighborhood level to the public tohelp better understand possible disparities.Performance on each criterion was scored usinga point system. States that provided citizens withthe least informative data scored 1 point. Statesthat provided citizens with moderately informa-tive data scored 2 points. States that provided cit-izens with the most informative data scored 4points.38 The criterion regarding written cancerprotocols was scored using a 2-point system.States with a written cancer cluster protocol inplace scored 2 points, states without one scored0 points. Scores on each criterion were addedtogether to create a category-specific grade. Toget an “A” in this category, states had to receivethe maximum possible points on every standard.

17

State Legislation

TFAH’s State Legislation criteria were basedon 9 NPCR program evaluation criteria.Performance on each criterion was scoredusing a 2-point system. States received 1

point for performing the criteria and 0points it did not. Scores on each criterionwere added together to create a category-specific grade. To get an “A” in this catego-ry, states had to receive the maximum possi-ble points on every standard.

GRADING SYSTEM GRIDCriteria Point System Final Weight

0 1 2 4Collect and report all NPCR-required data items** Missing 1

or more No missingUse NAACCR standardized record layout** No YesEmploy at least 1 certified tumor registrar** No YesWritten data quality policies & procedures** No YesPassing EDITS*/** < 97% ± 97% 100%Text information is included in computerized form as well as data codes** No YesRe-abstracting audits in reporting facilities performed within past year** No YesIndependent audit of the registry performed within past 5 years** No YesMissing age at diagnosis*/** > 3% † 3% † 2% 50%Missing race*/** > 5% † 5% † 3%Missing sex*/** > 3% † 3% † 2%Missing county/state*/** > 3% † 3% † 2%Duplicates*/** > 2/1,000 † 2/1,000 † 1/1,000Data ≥ 90% complete available within 23 months of the diagnosis year* No YesCurrent published annual reports available within 12 months of the diagnosis year (as of December 2002)** > 24 months † 24 months † 12 monthsInterstate data sharing agreements with all border & retirement states** No YesCompleteness*/** < 90% ≥ 90% ±95%Death clearance & follow-back*/** No DCO or >5% † 5% † 3%Case-finding audits in reporting facilities performed within past year** No YesData linked to health data (access/quality of care) and/or lifestyle behavioral risk factor data by registry or in partner with other state programs or departments*** No YesData linked to environmental risk factor databases by registry or in partner with other state programs or departments*** No Yes 20%Data linked to occupational risk factor databases by registry or in partner with other state programs or departments*** No YesRaw data available to external public health researchers*** No YesInformative geographic level*** County City/Zip Code Census Tracts/

Block GroupsInformative demographic categories at lowest geographic level*** < 2 variables 2 variables Gender, Race & AgeInformative tumor site data at lowest geographic level*** All sites combined Site Specific or All Sites Combined 20%

Appropriate and Site Specificaggregations

Written cancer cluster investigation protocols*** No YesComplete case reporting from all facilities diagnosing or treating cancer** No YesComplete case reporting from all practitioners diagnosing or treating cancer** No YesAccess to medical records** No YesUniform reporting format** No YesProtection of confidentiality** No Yes 10%Use of data for research** No YesRelease of data for research** No YesProtection of individuals from liability** No YesCases reported to central registry within 6 months** No Yes

*NAACCR registry certification program criteria; **NPCR program evaluation criteria; ***TFAH criteria

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Data Quality (50% of overall grade)

1) Report all NPCR data items –Standardized data collection is key to asurveillance system that ensures usefuldata on every case of cancer is collectedand allows cancer rates to be comparedand aggregated across state registries.

2) Use NAACCR standardized record layout– Standardized record layouts ensurethat data can be compiled from differentregistries.

3) Employ at least one certified tumor registrar – Certified tumor registrarsreceive specialized training and are essen-tial for effective registry functioning.

4) Written policies and procedures – Writtenprotocols available to registry staff withvaried experience and tenure are neces-sary to help ensure that registry opera-tions are consistent, and of high quality.

5) Passing EDITS – EDITS is a softwarelogic program developed by CDC andmaintained by NAACCR that registriesuse to test the validity and logic of indi-vidual cancer records.

6) Text information included in computer-ized form as well as data codes – Textinformation is vital for including moreinformation than is conveyed with stan-dardized coded data.

7) Re-abstracting audits in reporting facili-ties performed within the past year – Re-abstracting audits provide not only valu-able information regarding errorsreported in the original data file, but canprevent such errors in the future.

8) Independent audits of the registry per-formed within the past five years –Reviews of registry performance by inde-pendent experts or academic users of thedata provide a fresh perspective on reg-istry operations.

9) Missing age at diagnosis – No more than3% of reported cases should be missingdata on an individual’s age.

10) Missing race – No more than 5% ofreported cases should be missing dataon an individual’s race.

11) Missing sex – No more than 3% ofreported cases should be missing dataon an individual’s sex.

12) Missing county/state – No more than3% of reported cases should be missingdata on the county or state in which anindividual resides.

13) Duplicates – No more than 1 case per2,000 should have duplicate records foreach primary tumor.

14) Timely data – Complete, quality dataneed to be available within 23 months ofthe diagnosis.

15) Annual cancer reports – Annual cancerreports need to be made publicly avail-able within 12 months of the close ofthe diagnosis year. An annual reportcontains at minimum, age-adjusted inci-dence rates and age-adjusted mortalityrates for the diagnosis year by sex forselected cancer sites and, where appro-priate, by sex, race and ethnicity forselected cancer sites.39

16) Interstate data sharing agreements withall border and retirement states – Datasharing agreements ensure that if a stateresident is diagnosed outside of thestate, the diagnosis is reported back tothe state registry where the patient per-manently resides.

17) Completeness – Registries should con-tain at least 90% of state residents diag-nosed with cancer. Registries estimatethe percent of expected, unduplicatedcases to provide a measure of the com-pleteness of ascertaining all cases of can-cer diagnosed among state residents.

DESCRIPTION OF THE GRADING SYSTEM GRID

19

18) Death clearance and follow-back – Nomore than 5% of cases should be identi-fied through death certificates.Registries calculate the percent of casesthat are identified by death certificateonly, meaning the case escaped the nor-mal reporting process through hospitalor clinic procedures and was identifiedonly because the patient’s death certifi-cate noted the type of cancer.

19) Case-finding audits in reporting facili-ties performed within the past year –Case-findingaudits help to verify com-plete reporting of cancer by diagnosingfacilities and practitioners.

Data Linkage & Availability (20% of overall grade)

1) Data linked to health care interventiondata and/or lifestyle behavioral risk factordatabases by registry or in partner withother state programs or departments –Linking cancer registry data with healthcare intervention data and/or lifestylebehavioral risk factor data in order tohelp identify possible trends that warrantinvestigation or intervention.

2) Data linked to environmental risk factordatabases by registry or in partner withother state programs or departments –Linking cancer registry data with haz-ardous exposure data (air emissions, toxicexposures from hazardous waste sites,water quality, etc.) ensures that states areusing cancer registry data in order toidentify possible health trends that war-rant investigation or intervention.

3) Data linked to occupational risk factordatabases by registry or in partner withother state programs or departments –Linking cancer registry data with occupa-tional risk factor databases, such as occu-pational rosters, ensures that cancer datais being used to identify trends in specif-ic occupations that warrant investigationor intervention.

4) Raw data available to researchers – Statesneed to have provisions in place toensure that confidential case data can beprovided to external researchers for thepurpose of public health research.

Community-Level Answers (20% of overall grade)

1) Informative geographic level – Cancerdata provided to citizens should be at anappropriate geographic resolution toanswer community-level questions, whilemaintaining patient confidentiality. Dataat too large a geographic level oftendilutes the ability to observe trends in alocalized area.

2) Informative demographic categories atlowest geographic level – Data providedto the public should be stratified byinformative demographic variables, suchas age, sex and race, in order to observepossible trends, while maintainingpatient confidentiality.

3) Informative tumor site data at lowest geo-graphic level – Data provided to the pub-lic should contain overall cancer rates, aswell as site-specific and or appropriateaggregated data (e.g., leukemias), whilemaintaining patient confidentiality.

4) Written cluster investigation protocols –The existence of a written cluster investi-gation protocol helps to ensure that thestate provides a thorough response toinquiries and concerns regarding a possi-ble cancer cluster.

State Legislation (10% of overall grade)

Cancer registries require support andauthority through state legislation and/orregulations for effective operation and utili-ty. All standards used are NPCR programevaluation standards. NPCR requires statesthat receive funds through their program tocomply with standards 1-8 as delineated inthe Cancer Registries Amendment Act.

20

1) Complete case reporting from all facilitiesdiagnosing or treating cancer. State legis-lation/regulations should mandate thereporting of cancer cases to the registryby all hospitals, or other facilities provid-ing screening, diagnostic or therapeuticservices to patients with respect to cancer.

2) Complete case reporting from all practi-tioners diagnosing or treating cancer.State legislation/regulations should man-date that the reporting of cancer cases tothe cancer registry by physicians, sur-geons and all other health care practi-tioners diagnosing or providing treat-ment of cancer patients.

3) Access to medical records – State legisla-tion/regulations should mandate thatthe registry is to have access to all med-ical records that identify cases of canceror establish characteristics of the cancer,treatment of the cancer or medical statusof the individual.

4) Uniform reporting format – State legisla-tion/regulations should mandate thatreporting facilities use standardized dataformats when reporting data to the can-cer registry.

5) Protection of confidentiality – State legis-lation/regulations should mandate theprotection of confidentiality of all cancercase data reported to the cancer registry.

6) Use of data for research – State legisla-tion/regulations should authorize thestate cancer registry or other persons ororganizations to conduct studies utilizingregistry data, including studies of sourcesand causes of cancer, evaluations of thecost, quality, efficacy and appropriatenessof diagnostic, therapeutic, rehabilitativeand preventive services and programsrelating to cancer, and any other clinical,epidemiological or cancer research.

7) Release of data for research – State legis-lation/regulations should contain provi-sions by which confidential case datamay be disclosed to cancer researchers(in accordance with state law) for thepurposes of cancer prevention, controland research.

8) Protect individuals from liability – Statelegislation/regulations should protectindividuals who report informationregarding cancer cases to the registry orwho have access to cancer case informa-tion provided to the registry from liabili-ty in any civil action.

9) Cases reported to central registry within6 months – State legislation/regulationsshould require that facilities and individ-uals report cases to the cancer registrywithin 6 months of the diagnosis.

21

NAACCR Certification Level StateGold Alaska Michigan

California MinnesotaColorado MissouriConnecticut NebraskaDistrict of Columbia NevadaFlorida New HampshireGeorgia New JerseyHawaii New YorkIdaho North CarolinaIllinois OregonIowa PennsylvaniaKansas Rhode IslandKentucky WashingtonLouisiana West VirginiaMaryland WisconsinMassachusetts Wyoming

Silver Alabama North DakotaArizona OhioIndiana South CarolinaMontana UtahNew Mexico

Appendix B: NAACCR CERTIFICATION LEVELS FOR 2000 INCIDENCE DATA40

IMPROVING CANCER TRACKING TODAY SAVES LIVES TOMORROW: DO STATES MAKE THE GRADE?

AUTHORSShelley A. Hearne, DrPHExecutive DirectorTrust for America’s Health

Susan L. Polan, PhDDirector of Government RelationsTrust for America’s Health

Laura M. Segal, MADirector of CommunicationsTrust for America’s Health

Patti J. UnruhSenior Communications AssociateTrust for America’s Health

CONTRIBUTING AUTHORRichard W. Clapp, MPH, DSC

TECHNICAL SUPPORT

Tellus Institute, Environmental HealthProgram

PEER REVIEWERSThe opinions expressed in this report do not necessarily reflect the views of these individuals or organizations.

Division of Cancer Prevention and ControlNational Center for Chronic DiseasePrevention and Health PromotionCenters for Disease Control and Prevention

Division of Cancer Control andPopulation SciencesNational Cancer InstituteNational Institutes of Health

Elizabeth Ward, PhDDirector, Surveillance ResearchDepartment of Epidemiology andSurveillance ResearchAmerican Cancer Society

Daniel Wartenberg, PhDProfessor University of Medicine and DentistryNew Jersey – Robert Wood JohnsonMedical School Department of Environmental andCommunity Medicine, Environmental andOccupational Health Sciences Instituteand Cancer Institute of New Jersey

22

Endnotes1 The Mellman Group, Inc. and Public Opinion

Strategies. “National Survey on PublicPerceptions of Risk from Bioterrorism andOther Health Threats,” Trust for America’sHealth. <http://healthyamericans.org/news-room/surveymemo0515.pdf.> 15 May 2002.

2 “Cancer Facts & Figures 2003.” AmericanCancer Society. Atlanta, Georgia. 2003.

3 “Cancer Registries: The Foundation for CancerPrevention and Control.” Centers for DiseaseControl and Prevention. <http://www.cdc.gov/nccdphp/bb_cancer_reg/.> 2001.

4 “Cancer Facts & Figures 2003.” AmericanCancer Society. Atlanta, Georgia. 2003. Thisestimate excludes noninvasive cancer of anysite except urinary bladder, and does notinclude basal and squamous cell skin cancers.

5 “Cancer Facts & Figures 2003.” AmericanCancer Society. Atlanta, Georgia. 2003.

6 Ibid.

7 TFAH calculation based on 1996-2000 prostatecancer incidence rates of 164.3 per 100,000 forwhite males and 272.1 per 100,000 for African-

Americans. Source for prostate cancer incidencerates: “Cancer Health Disparities,” NationalCancer Institute. <http://www.cancer.gov/ news-center/healthdisparities.> 23 April 2003.

8 “Cancer Health Disparities.” National CancerInstitute. <http://www.cancer.gov/newscen-ter/healthdisparities.> 23 April 2003.

9 “Cancer Facts & Figures 2003.” AmericanCancer Society. Atlanta, Georgia. 2003.

10 “Importance of Cancer Registry.” NationalCancer Institute, <http://training.seer.can-cer.gov/module_cancer_registration/unit1_importance.html.> Accessed 4 August 2003.

11 Several states that participated in the Trustfor America’s Health evaluation have reg-istries (either state-wide or regional) that cur-rently participate in the SEER program.These states include Alaska (Alaska NativeTumor Registry), California, Georgia (theAtlanta and Rural Georgia Registries),Washington (Seattle-Puget Sound Registry)and Michigan (Detroit registry).

12 “2003 Program Fact Sheet, Cancer Registries:The Foundation for Cancer Prevention andControl.” Centers for Disease Control andP r e v e n t i o n . < h t t p : / / w w w. c d c . g o v /cancer/npcr/register.htm.> 19 August 2003.

13 United States Cancer Statistics: 1999Incidence. Atlanta (GA): Department ofHealth and Human Services U.S. CancerStatistics Working Group, Centers for DiseaseControl and Prevention and National CancerInstitute; 2002.

14 Weigs JW. “Epidemic Lung Cancer inWomen,” The Journal of the AmericanMedical Association, 1977: 238:10.

15 Ries LAG, Eisner MP, Kosary CL, Hankey BF,Miller BA, Clegg L, Mariotto A, Fay MP, FeuerEJ, Edwards BK (eds). SEER Cancer StatisticsReview, 1975 -2000. National Cancer Institute,Bethesda, MD, <http://www.seer.cancer.gov/csr/1975_2000/.> 2003.

16 “Cancer Registries: The Foundation forCancer Prevention and Control AT-A-GLANCE 2001.” Centers for Disease Controland Prevention. <http://www.cdc.gov/can-cer/npcr/2001AAG-npcr.htm.> 2001.

17 Longnecker, et al. “Risk of Breast Cancer InRelation To Lifetime Alcohol Consumption.”J Natl Cancer Institute, 1995; 87:923-929.

18 One limitation of TFAH’s survey is that itdoes not take into account the fact that statecancer tracking programs are at varyingstages of development and have varying levelsof resources. Older programs may have hadmany opportunities for data linkages andcommunity interactions than newer registriesthat have only recently received federal fund-ing. Newer cancer tracking programs maytherefore be focusing their attention andresources on establishing themselves andmeeting minimum quality standards.

19 Tennessee and South Dakota are the only twostates receiving ‘capacity-building funds’ fromNPCR for the purpose of developing cancerregistries where a limited or no statewide reg-istry previously existed (“NPCR FundedStates.” Center for Disease Control andPrevention. <www.cdc.gov/cancer/npcr/awards.htm>). 26 August 2003.

23

20 South Dakota participated in TFAH’s study.However, as the registry is presently in transi-tion from a limited cancer data collection system to a statewide, population-based reg-istry. Accordingly, the data provided werenot sufficient for grading in comparison toother states.

21 “Cancer Registries: The Foundation forCancer Prevention and Control AT-A-GLANCE 2001.” Centers for Disease Controland Prevention. <http://www.cdc.gov/can-cer/npcr/2001AAG-npcr.htm.> 2001.

22 The Behavioral Risk Factor SurveillanceSystem (BRFSS) is a telephone survey con-ducted by all state health departments, theDistrict of Columbia, Puerto Rico, the VirginIslands, and Guam with assistance from CDC.The BRFSS is the largest continuously con-ducted telephone health survey in the world.States use BRFSS data to track critical healthproblems and to develop and evaluate publichealth programs.

23 “Cancer Surveillance System (NPCR-CSS).”Centers for Disease Control and Prevention.<http://www.cdc.gov/cancer/npcr/npcr-css.htm.> July 1999

24 Trumbo, Craig W. “Public Requests forCancer Cluster Investigations: A Survey ofState Health Departments,” AmericanJournal of Public Health. August 2000: 90(8).

25 Neutra, R.. “Reviews and Commentary:Counterpoint from a Cluster Buster,”American Journal of Epidemiology. July1990: 132(1).

26 Sankila R, et al. “Informed Consent inCancer Registries,” Lancet (letter), 12 May2001: 357: 1536.

27 Hodge, James G Jr. Letter to Holly L. Howe,Executive Director, North AmericanAssociation Central Cancer Registries.<http://www.naaccr.org/filesystem/pdf/Academic_Letter_Interpreting_HIPAA2.pdf.>July 2001: 13.

28 “Cancer Health Disparities.” National CancerInstitute. <http://www.cancer.gov/newscen-ter/healthdisparities.> 23 April 2003.

29 Haynes, Alfred M and Smedley, Brian D(eds). The Unequal Burden of Cancer: AnAssessment of NIH Research and Programsfor Ethnic Minorities and the MedicallyUnderserved. Committee on CancerResearch Among Minorities and theMedically Underserved, Institute ofMedicine. 1999.

30 “North American Association of CentralCancer Registries Overarching Goals andTasks,” NAACCR Leadership Retreat.<http://www.naaccr.org/filesystem/pdf/Overarchinggoals2003-2005%2001-25-03.pdf.>October 2002.

31 “The New York State Cancer SurveillanceImprovement Initiative.” New York State HealthDepartment. <http://www.health.state.ny.us/n y s d o h / c a n c e r / s u b l e v e l / c s i i . h t m . > December 2000.

32 “2002 Program Fact Sheet Cancer Registries:The Foundation for Cancer Prevention andControl.” Centers for Disease Control andPrevention. <http://www.cdc.gov/cancer/npcr/register2002.htm.> 2002.

33 “NPCR - The First 10 Years NPCR.” Centersfor Disease Control and Prevention.<http://www.cdc.gov/cancer/npcr/npcr-pdfs/handout.pdf.> 2002.

34 “Case-control Study of Childhood Cancers inDover Township (Ocean County), New Jersey,”Volume II: Final Technical Report. Division ofEpidemiology, Environmental andOccupational Health, New Jersey Departmentof Health and Human Services in cooperationwith the Agency for Toxic Substances andDisease Registry, U.S. Department of Healthand Human Services. <http://www.state.nj.us/health/eoh/hhazweb/case-control_pdf/Volume_II/vol_ii.pdf.> January 2003.

35 Hutton, M, Simpson, L, Miller, D, et al.“Progress Toward Nationwide CancerSurveillance: An Evaluation of the NationalProgram of Cancer Registries: 1994-1999,”Journal of Registry Management. 2001: 28:3:113-120.

24

36 “Criteria and Standards for NAACCRCertification.” North American Association ofCentral Cancer Registries. <http://www.naac-cr.org/filesystem/pdf/finalcriteriaforRegistrycertificationpage.pdf.> Accessed 2 September2003.

37 Data linkages conducted by a registry for thepurpose of case ascertainment or data qualitywere excluded.

38 ‘Most informative’ is defined as the data:were at the census tract/census block level(or relevant aggregations); did include spe-cific demographic stratifications (race sex,age); and included cancer data for site spe-cific cancer sites and all sites combined. Dataavailability was also categorized into two addi-tional groups: ‘Least informative,’ defined asthe data were: at the county level or higher;did not include all specific demographicstratifications (race, sex and age); and onlyincluded cancer data for all cancer sites com-bined, or ‘Moderately informative,’ definedas the data: were at the city/town zip-codelevel; did not include all specific demograph-ic stratifications (race, sex, age); and onlyincluded cancer data for site specific cancersites or appropriate aggregations. Statesreceived 4 points for the most informativedata, 2 points for moderately informativedata and 1 point for least informative data.

39 “Program Announcement 02060: NationalCancer Prevention and Control ProgramNotice of Availability of Funds.” Centers forDisease Control and Prevention.<http://www.cdc.gov/cancer/dcpcpdf/Program-Announcement-02060.pdf.> 2002: 45.

40 “2002 Certified Registries of 2000 IncidenceData.” North American Association ofCentral Cancer Registries. <http://www.naac-cr.org/index.asp?Col_SectionKey=12&Col_ContentID=98.> 2002.

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