the rhode island latino cancer control task force (lcctf)

Assessing Cancer Registry Systems: Challenges and Opportunities for Improving Outreach in Rhode Island Minority Populations

The Rhode Island Latino Cancer Control Task Force (LCCTF)

Bridging the Health Care Divide: Research and Programs to Eliminate Cancer Disparities

American Cancer Society Conference New Orleans, Louisiana

April 18-20, 2007

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Building a Coalition

2000 General Assembly urges Rhode Island cities and towns to create municipal Cancer Control Task Forces.

Established partnership among American Cancer Society, RIDOH, RICAN

13 coalitions were formed.

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Neither one focused on dispair populations.

Hispanic/Latinos are the majority of the minority groups in RI, representing almost 12% of the overall population.

Among the Hispanic/Latino population, Cancer was the leading cost of death during the period of 1999-2004 in the State of Rhode Island.

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The Formation of the Latino Cancer Control Task Force will help: to determine the nature of cancer challenge in

our community, to examine its causes, and to identify resources, gaps and opportunities,

in order to develop prioritized strategies that will diminish the cancer deaths among the Latino community in our state.

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October 20, 2005, The Latino Cancer Control Task Force

(LCCTF) was created as a volunteer-based Community group formed

in response to the need to reduce the leading causes of cancer morbidity and

mortality among Hispanic/Latinos in Rhode Island.

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The Latino Cancer Control Task Force Mission Statement

The Latino Cancer Control Task Force aims to reduce the impact of cancer in the Latino

community in Rhode Island

by facilitating cancer prevention through outreach, public education, awareness, early

detection, access to care and advocacy,

and improving care and quality of life for cancer patients, their families, and caregivers.

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The Latino Cancer Control Task ForceGoals and Objectives

Advocacy. Being vigorous advocates for cancer control, supporting public policy initiatives and research, and developing strategic alliances with governmental agencies, hospitals, nongovernmental health promotion organizations, health professionals, the community, and the media.

Outreach. Providing outreach targeting the different populations, institutions, providers, policy makers, advocates, community leaders and organizations to increase knowledge and awareness of cancer issues affecting Latinos.

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The Latino Cancer Control Task Force Goals and Objectives

Education. Preventing cancer by increasing knowledge and awareness of cancer and by encouraging healthier behaviors.

Services. Promoting the early detection of cancer through public education and access to screenings and treatment.

Quality of life. Improving patients' quality of life and minimizing their suffering through education, support, and palliative care.

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The Latino Cancer Control Structure

Co-Chairs(2)

Data AnalysisWorkgroup

OutreachWorkgroup

Policy & Advocacy

Workgroup

MediaWorkgroup

Secretary Treasurer

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LCCTF Projects

Conduct an assessment on what resources are available to the Hispanic/Latino population.

Assess how data is collected and interpreted by regulatory offices.

Bring together Latino health professionals to educate and create community awareness on the issues of cancer prevention and early detection.

Trough our Advocacy workgroup support American Cancer Society Legislative Policy Priorities.

Ensure fair access to screenings and treatment.

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LCCTF Accomplishments

Membership: LCCTF membership represents the vast diversity of Latinos in RI.

Data Analysis: Data Analysis workgroup conducted a survey to all RI Hospitals.

1st. Annual Conference “Mujeres Hablemos Claro! La Salud del Seno” 183 registered, 126 attended, 60 new volunteers, 13 “De Amiga a Amiga” volunteers trained.

Legislation Introduced by one of LCCTF members Senator Juan Pichardo, asking to increase the funds for the WCSP.

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LCCTF Data Systems Project

Assess how data is collected and interpreted by regulatory offices

The Rhode Island Cancer Registry System Study

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The RICR System Study -Objectives

Conduct an assessment of the Rhode Island Cancer Registry (RICR) System

Determine how race and ethnicity information of cancer patients is collected and reported

Identify strengths, limitations and opportunities for improving CR information quality and data utilization for population targeting and outreach

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Main Questions

What are the start and end-points of the RI CR?

What is the guideline?

Is there compliance with OMB 15?What are the implications of non-uniform reporting?

Other study findingsCan under-reporting be corrected?

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Start and End-Points - RICR

Cancer Patients

DATA SYSTEM

COLLECTION AGGREGATION LOCAL, REGIONAL AND NATIONAL REPORTING

Cancer Patients/Cancer

Families

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What is the Guideline?

The Rhode Island Department of Health requires healthproviders to collect the following demographic information about their patients:

What is your ethnic background? Hispanic/Latino Not Hispanic/Latino

What is your race? (please indicate all races that apply) American Indian or Alaskan Native

Asian Black or African American Native Hawaiian or other Pacific Islander White

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OMB 15

Is there compliance in the collection and reporting of race and ethnicity?

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RICRS Assessment - Methods

Hospital Survey 14 acute care hospitals13 cancer registries hospital cancer registry data not a start or end-point

Key Informant Interviews3 key informantspublic health, health care industry and national voluntary health organization

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Hospital Cancer Registry Survey

Unit of Analysis: hospitals (information collected via questionnaire)

Population of Interest: Rhode Islanders with a diagnosis of primary cancer

Main Topics: forms used for cancer patient intake, collection of cancer risk factors and race/ethnicity information, content of database and access to cancer registry data, feasibility of CR and MR linkage, frequency of reports and organizations receiving reports (22 questions)

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Participating Hospitals (N=14)

Kent Hospital Landmark Medical Center Memorial Hospital of Rhode Island Miriam Hospital Naval Health Care New England Newport Hospital Rhode Island Hospital Roger Williams Medical Center South County Hospital St. Joseph Hospital Our Lady of Fatima Hospital VA Medical Center Westerly Hospital Women & Infants Hospital

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Key Informant Interviews

Unit of Analysis: individual expertise in cancer data systems (information collected via questionnaire)

Population of Interest: US population with a diagnosis of primary cancer

Main Topics: reporting organizations, types/ format of information reported, risk factor and race/ethnicity information quality, methods for adjusting under-reporting, OMB compliance, database content and access to cancer registry data, feasibility of CR and MR linkage, frequency of reports and agencies targeted (26 questions)

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Key Informants (N=3)

John Fulton, PhD Director, Rhode Island Cancer Registry Associate Director of Health Rhode Island Department of Health

David Rousseau, PhD Director, Cancer Information Systems Hospital Association of Rhode Island

Jimmy Parson, PhD Research and Analysis Manager American Cancer Society, NHO

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Analysis

Hospital Survey Since sample size was small, results are presented as frequencies and percents Because some questions asked for more than

1 response, some figures exceed the total number of expected responses

Responses were converted into ordinal scales (i.e.; all=100%; most=70-99%; some=40-69%; a few=1-39%; none=0%) Ordinal scales were grouped by topic in order

to summarize findings

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Analysis

Key Informant InterviewsEmphasis set on the qualitative aspects of informationResults not presented in frequencies or percents Information used to gain a better insight into

hospital survey results and inform discussion of findings and recommendations to 1) help improve the quality of cancer registries and 2) translate findings into improved outreach

practices

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Results Hospital Survey

Summary 14 Rhode Island hospitals have cancer registries Requested participation of hospital cancer

registrars Respondents signed consent form 1 initial mailing and two respondent follow-ups 11 hospital cancer registries responded (79%

response rate) Findings presented here exclude non-respondents Respondent follow-up ended 04-16-07 2 hospitals share the same reporting system

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Results Hospital Survey

Forms Do hospitals with CRs have intake forms (IF)

specific for cancer?5 hospitals (45%) have an IF for cancer; 5 hospitals

(45%) use a general IF Is information on cancer risk factors obtained via

cancer IF?3 hospitals (30%) collect cancer risk factor

information on these forms Is other form used to obtain cancer risk factor

information?6 hospitals (56%) use other sources

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Results Hospital Survey (cont.)

Forms What form is used to determine the race of cancer patients?

10% (1 out of 4 with cancer intake forms) ask for race

5 hospitals (50%) ask for race thru general intake forms

4 hospitals (40%) use other forms (medical records, physical exam, medical history)

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Forms What form is used to determine the ethnicity of cancer patients?

11% (1 out of 4 with cancer intake forms)

4 hospitals (44%) use general intake forms

4 hospitals (44%) use other forms

2 hospitals did not respond to this question

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FormsFrom findings presented so far: race (50%) and

ethnicity (56%) are obtained via intake forms by

40% of hospitals with cancer registries

How many races can be checked in the intake form?

1 race: 1 hospital (9%)2 races: 2 hospitals (18%)2 or more races: 4 hospitals (36%)

4 hospitals (36%) do not collect this information in the intake form

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Forms

What form is used to determine the country of origin of cancer patients?

1 hospital (11%) uses the cancer intake form to obtain information on country of origin

8 hospitals (88%) reported not collecting information on country of origin

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Race/Ethnicity/Country of Origin How is the race of a cancer patient determined? (multiple response question)

a. In 4 hospitals (36%) patient self-reports race

b. In 5 hospitals (45%) person filling form asks patient

c. In 1 hospital (9%) person filling form makes a guess

d. In 4 hospitals (36%) information obtained from MR

e. 1 hospital (9%) uses medical history/physical exam 2 hospitals use a combination of methods b and d 1 hospital use a combination of methods b and c

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Race/Ethnicity/Country of Origin

How is the ethnicity of a cancer patient determined? (multiple response question)

a. 3 hospitals (27%) present the patient with a standard form and the question “Are you from Hispanic or Latino origin”

b. 6 hospitals (56%) ask patients about their ethnicity in a non-standard way

c. 2 hospitals (18%) reported “unknown”

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Access to Cancer Data

Does the intake form have a number that can be used to link with the patient medical record?

All (7 out of 7 hospitals with intake forms) can link to MRs

Do hospitals aggregate information of cancer cases (from intake and other forms) into a database?

All (11 out of 11 hospitals)

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Access to Cancer Data

Is cancer data available to researchers from academic institutions?

10 hospitals (91%) provide access to cancer data

Is there an internal procedure to obtain access?

10 hospitals (91%) have an IRB process in place

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Reporting To what organizations do you report cancer data?

5 hospitals (45%) to NCBD (National CAHPS Benchmarking Database); yearly 1 hospital (9%) to CIRF (Cancer Information Reference

File); yearly4 hospitals (36%) to the National Cancer Database of the American College of Surgeons (ACS); yearlyAll to the Rhode Island Cancer Registry (RICR); monthlyAll to the Hospital Association of Rhode Island (HARI); monthly

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Reporting

Is the data you report linked to medical records?

4 hospitals (37%) have MR linkage capacity

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Key Informant Results

TOPIC HARI RI CR ACSWho reports; 13 hospital CR; 21 Century 13 hospital CR; 6 state CR; Americans for Non-Smokershow often? Oncology Services (monthly) pathology labs; surgical Rights; National Breast and

centers (monthly) Cervical Cancer Early

Detection Program; Tobacco Free Kids; National Committee for Quality Assurance (NCQA), Colorectal Screenings in

Health Plans; UC Berkeley, Smoking Cessation for Medicaid; Smoke Free Grade, American Lung

Association; Cancer Incidence Rates, National Program of Cancer Registries; Behavioral Risk Factor Surveillance System (BRFSS) and Youth Risk Factor Surveillance System (YRBFS) (all yearly)

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Key Informant Results (cont.)

TOPIC HARI RI CR ACS

Data format single format: North single format (NAACCR) multiple formats (excel,American Association word, pdf and text)of Central Cancer Registries (NAACCR)

Database www.naaccr.org www.naaccr.org n/aSpecifications

Cancer risk smoking status and no cancer RF data smoking; Thompson MedstatFactors (RF) occupation PULSE Survey

Screening no screening data no screening data breast and colorectal screen.

Race/ethnicity yes yes yes

# of races most report 1 race most report 1 race (“can most report 1 raceReported report up to six”)

Information on no some; “this is a variable in no how is race the NCAACCR data set, but determined? HEALTH does not require it”

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Information on no no a fewhow ethnicity isdetermined?

Do you provide “Race and ethnicity treated When directed by feds “We only look at race/

guidance to like all other data items When required by state ethnicity data forcomply with required by law” When requested by hospitals screening data and

dataOMB 15? When required by RI HARI coming from CDC”

Target year for no “It’s being discussed but no responsehelping partners no date yet”achieve OMB 15compliance?

Organizations -NAACCR -NAACCR -ACS Divisions

(monthly)you report data -National Program of -CDC -ACS Management (asto? Cancer Registries (CDC) -International Association needed)

-RI Department of Health of Cancer Registries (IACR)-Central Brain Tumor (yearly)

Registry of United Sates (CBTRUS); (yearly)

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Uses Spanish Uses NAACCR algorithm “We can do this, but as a “We don’t go into that levelsurname method (last name + place of birth) separate variable…we of detail in our reporting.to adjust to determine Hispanic don’t report it to CDC, We rely on externalunder-reporting? sources”

How do you 1 race + ethnicity (“2nd “Several formats per 1 race + ethnicity report data on racial group almost never request“race/ethnicity? recorded in medical

Do you keep yes yes “Not to my knowledge. Weidentifiers to link have worked with ACoS tocancer registry determine underserved inand MR data? hospitals but it is not

possible to link up”

Is your data yes yes “We dot provide this dataavailable to IRB approval may be at this time”researchers? necessary

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How many data blank 6 data inquiries 0inquiries and [Note: research proposals 0 research are handled by the IRBproposals do Committee]receive per year?

Is there an IRB yes yes blankprocedure?

What cancer Contact Dr. John Fulton -Annual Report -Mission Scorecard (yearly)

reports does your -RI Cancer Burden -Mission Dashboard (yearly)

organization (annual update) -Best Practices Reports produce? -Special reports (ongoing) (ongoing)

Do you report yes yes yes cancer data within yourorganization?

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RI CR Assessment: Start/End-Points

Naval HC NE

Miriam H.

Memorial H RI

Landmark MC

Kent H.

Newport H.

Rhode Island H.

R. Williams MC

South County H.

St .Joseph H.

Our Lady of Fatima

VA MC

Westerly H.

Women & Infants.

Hospitals CRs1

2

3

4

5

6

7

8

9

10

11

12

13

HARI

RI CR

6 states

pathology labs, surgical centers

21st Century Oncology Services

Cancer Patients

CDC

NAACCR

CBTRUS

CDC

NAACCR

IACR

ACS

NCQA

Colorectal Screenings in Health Plans

ALA

BRFSSYBRFS

NPCR

ACS Divisions

ACS Management

Cancer Patients/Cancer

Families/Communities

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Compliance with OMB 15?

Findings from the hospital cancer registry survey indicated lack of uniform collection of information on race and ethnicity.

Only a few hospitals ask patients to self-report their race (27%) and ethnicity (27%) according to the guideline Only a few hospitals (36%) collect information on 2 or more races

The Key Informant Interview revealed that most cancer data sources only report 1 race

There is no target date yet in RI for achieving OMB 15 compliance with cancer data reporting

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Summary of Findings 1. Use of Intake Forms (IFs) specific to cancer2. Use of IFs (cancer-specific and general)3. Use of IFs to obtain cancer risk factor (CRF) information4. Use of other forms to obtain CRF information5. Collection of CRF information from all sources6. Is reporting of CRF information a RI CR requirement?7. Race information obtained at point of entry (POE)8. Race information obtained from other sources9. Ethnicity information obtained at POE10. Ethnicity information obtained from other sources11. RI CR mechanism to monitor OMB 15 compliance?12. Collection of information on country of origin13. IF/MR linkage14. RI CR/MR linkage15. Patient self-reporting of race and ethnicity16. Collection of information of two or more races17. Reporting of two or more races18. Target date for OMB 15 compliance?19. Cancer data available/IRB process in place

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Summary of Findings 1.

2.

3. 4.

5.

6. NO 7.

8. 9.

10.11. NO12.

13.14.

15.

16.

17.

18. NO

19.

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

??

45%91%

30%60%

90%

91%

60%40%

56%44%

12%100%

9%

37%27%

36%

Hospital Cancer Registry SurveyKey Informant Interview

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Implications of Non-Compliance

Undercount of multi-racial ethnic groups; over count of non multi-racial ethnic groupsUnderestimates in cancer prevalence, incidence and mortalityProblem may not be limited to the RI CRS; other RI/national data sets may be affectedDifficult targeting and outreach of multi- racial ethnic groupsMisdirecting resources for targeting/outreachPotential for unsound public health practice

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Other Study Conclusions

All = 100%; Most = 70-99%; Some = 40-69%; A few = 1-39%; None = 0%

The form closest to the information entry point is the IF

Most hospitals (91%) reported use of IFsA few hospitals (30%) use IFs to collect information

on cancer risk factors (RFs)Some hospitals (60%) use other forms

While some cancer RF information is obtained at the point of entry, the Key Informant Survey revealed no reporting requirement

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Other Study Conclusions (cont.)


About half of the information on race and ethnicity obtained at the point of entry (IF)

Some hospitals (60%) obtain race information thru IFs; some hospitals (56%) use IFs for ethnicityA few hospitals (40%) use other forms to determine race and some (44%) for ethnicity

The Key Informant Survey determined that:There is no mechanism in the RI CR system to monitor OMB 15 complianceNo information is reported on how race and ethnicity data are collected

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Other Study Conclusions (cont.)


Most hospitals (88%) do not collect information on country of origin

1 asks for country of origin1 asks for main language

All hospitals with IFs can link back to MRs; only a few hospitals (37%) can link back to MRs data reported to the RI CR

However, HARI and the RI CR require a field in reported databases that can be used to link to MRs

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Can the Problem be Fixed?

Our recommendations:

Improve data quality at the point of entry and monitor data quality collection and reporting on key variables including race and ethnicity

In the interim, promote use and refinement of the Spanish Surname Algorithm to determine the extent of the undercount of Hispanic cancer cases and institutionalize dissemination of more reliable cancer statistics

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Apply the Guideline Please

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Contact Information

Alvaro M Tinajero, MD, MPH, [email protected]@[email protected]

Mercedes (Betty) [email protected]

the rhode island latino cancer control task force (lcctf)

Documents

cancer patients

impact of cancer

cancer deaths

awareness of cancer

early detection of cancer

issues of cancer prevention

cancer registry systems

nature of cancer challenge