The Rhode Island Latino Cancer Control Task Force (LCCTF)

1. 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

2. 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.

3. Building a Coalition • 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.

4. Building a Coalition 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.

5. Building a Coalition 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.

6. 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.

7. 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.

8. 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.

9. The Latino Cancer Control Structure

10. 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.

11. LCCTF Accomplishments • Membership:LCCTF membership represents the vast diversity of Latinos in RI. • Data Analysis: DataAnalysis workgroupconducted 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.

12. LCCTF Data Systems Project Assess how data is collected and interpreted by regulatory offices • The Rhode Island Cancer Registry System Study

13. 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

14. 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 findings • Can under-reporting be corrected?

15. Start and End-Points - RICR COLLECTION AGGREGATION LOCAL, REGIONAL AND NATIONAL REPORTING DATA SYSTEM Cancer Patients Cancer Patients/Cancer Families

16. What is the Guideline? The Rhode Island Department of Health requires health providers 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

17. OMB 15 Is there compliance in the collection and reporting of race and ethnicity?

18. RICRS Assessment - Methods • Hospital Survey • 14 acute care hospitals • 13 cancer registries • hospital cancer registry data not a start or end-point • Key Informant Interviews • 3 key informants • public health, health care industry and national voluntary health organization

19. 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)

20. 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

21. 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)

22. 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

23. 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

24. Analysis Key Informant Interviews • Emphasis set on the qualitative aspects of information • Results 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

25. Main 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 exclude non-respondents • Respondent follow-up ended 04-16-07 • 2 hospitals share the same reporting system

26. Main Results -Hospital Survey(cont.) Race/Ethnicity/Country of Origin • How is the race of a cancer patient determined? (this was a multiple response question) • In 4 hospitals(36%)patient self-reports race • In 5 hospitals(45%)person filling form asks patient • In 1 hospital(9%)person filling form makes a guess • In 4 hospitals(36%)information obtained from MR • 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

27. Main Results -Hospital Survey(cont.) Race/Ethnicity/Country of Origin • How is the ethnicity of a cancer patient determined?(multiple response question) • 3 hospitals (27%) present the patient with a standard form and the question “Are you from Hispanic or Latino origin” • 6 hospitals (56%) ask patients about their ethnicity in a non-standard way • 2 hospitals (18%) reported “unknown”

28. Key Informant Main Findings TOPICHARIRI CRACS Race/ethnicity yes yes yes # of races most report 1 race most report 1 race (“can most report 1 race reported 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” Information on no no a few how ethnicity is determined? Do you provide “Race and ethnicity When directed by feds “We only look at race/ guidance to treated like all other When required by state ethnicity data for comply with data itemsrequired When requested by hospitals screening data and data OMB 15? by law” When required by RI HARI coming from CDC” Target year for no “It’s being discussed but no response helping partners no date yet” achieve OMB 15 compliance?

29. Start and End-Points - RICR Hospitals CRs Kent H. 1 Colorectal Screenings in Health Plans Landmark MC 2 NCQA ALA Memorial H RI 3 21st Century Oncology Services Miriam H. 4 BRFSS YBRFS CDC Naval HC NE 5 NAACCR NPCR HARI Newport H. 6 CBTRUS ACS Rhode Island H. 7 Cancer Patients CDC R. Williams MC 8 RI CR NAACCR South County H. 9 ACS Divisions ACS Management IACR St .Joseph H. 6 states 10 Our Lady of Fatima pathology labs, surgical centers VA MC 11 Westerly H. 12 Cancer Patients/Cancer Families? Women & Infants. 13

30. 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

31. Summary of Findings  1.  Use of Intake Forms (IFs) specific to cancer 2.  Use of IFs (cancer-specific and general) 3.  Use of IFs to obtain cancer risk factor (CRF) information 4.  Use of other forms to obtain CRF information 5.  Collection of CRF information from all sources 6.  Is reporting of CRF information a RI CR requirement? 7.  Race information obtained at point of entry (POE) 8.  Race information obtained from other sources 9.  Ethnicity information obtained at POE 10. Ethnicity information obtained from other sources 11. RI CR mechanism to monitor OMB 15 compliance? 12. Collection of information on country of origin 13. IF/MR linkage 14. RI CR/MR linkage 15. Patient self-reporting of race and ethnicity 16. Collection of information of two or more races 17. Reporting of two or more races 18. Target date for OMB 15 compliance? 19. Cancer data available/IRB process in place

32. Summary of Findings 45% 1. 2. 3. 4. 5. 6. NO 7. 8. 9. 10. 11. NO 12. 13. 14. 15. 16. 17. 18. NO 19. 91% 30% 60% 90% 60% 40% 56% 44% 12% 100% 37% ?? 27% 36% 9% 91% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Hospital Cancer Registry Survey Key Informant Interview

33. Implications of Non-Compliance • Undercount of multi-racial ethnic groups; over count of non multi-racial ethnic groups • Underestimates in cancer prevalence, incidence and mortality • Problem may not be limited to the RI CRS; other RI/national data sets may be affected • Difficult targeting and outreach of multi- racial ethnic groups • Misdirecting resources for targeting/outreach • Potential for unsound public health practice

34. Can the Problem be Fixed? Our recommendations: • Improve data quality at the point of entry and monitordata 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 institutionalizedissemination of more reliable cancer statistics

35. Apply the Guideline Please

36. Contact Information Alvaro M Tinajero, MD, MPH, ScM Alvaro_Tinajero@brown.edu Alvaro.Tinajero@health.ri.gov Alvaro.Tinajero@gmail.com Mercedes (Betty) Bernal Betty.Bernal@cancer.org