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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.

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The Rhode Island Latino Cancer Control Task Force (LCCTF)

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  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. 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

  26. 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

  27. 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)

  28. Results Hospital Survey(cont.) 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

  29. Results Hospital Survey(cont.) Forms From 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

  30. Results Hospital Survey(cont.) 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

  31. Results Hospital Survey(cont.) Race/Ethnicity/Country of Origin • How is the race of a cancer patient determined? (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

  32. 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”

  33. Results Hospital Survey(cont.) Access to Cancer Data • Does the intake form have a number that can beused 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)

  34. Results Hospital Survey(cont.) 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

  35. Results Hospital Survey(cont.) 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); yearly • 4 hospitals (36%) to the National Cancer Database of the American College of Surgeons (ACS); yearly • All to the Rhode Island Cancer Registry (RICR); monthly • All to the Hospital Association of Rhode Island (HARI); monthly

  36. Results Hospital Survey(cont.) Reporting • Is the data you report linked to medical records? • 4 hospitals (37%) have MR linkage capacity

  37. Key Informant Results TOPICHARIRI CRACS Who reports;13 hospital CR; 21 Century 13 hospital CR; 6 state CR; Americans for Non-Smokers how 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)

  38. Key Informant Results (cont.) TOPICHARIRI CRACS Data formatsingle format: North single format (NAACCR) multiple formats (excel, American Association word, pdf and text) of Central Cancer Registries (NAACCR) Database www.naaccr.orgwww.naaccr.orgn/a Specifications Cancer risk smoking status and no cancer RF data smoking; Thompson Medstat Factors (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 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”

  39. Key Informant Results (cont.) TOPICHARIRI CRACS Information on no no a few how ethnicity is determined? 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 for comply with required by law” When requested by hospitals screening data and data OMB 15? 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? Organizations -NAACCR -NAACCR -ACS Divisions (monthly) you report data -National Program of -CDC -ACS Management (as to? Cancer Registries (CDC) -International Association needed) -RI Department of Health of Cancer Registries (IACR) -Central Brain Tumor (yearly) Registry of United Sates (CBTRUS); (yearly)

  40. Key Informant Results (cont.) TOPICHARIRI CRACS Uses Spanish Uses NAACCR algorithm “We can do this, but as a “We don’t go into that level surname 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 external under-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. We identifiers to link have worked with ACoS to cancer registry determine underserved in and MR data? hospitals but it is not possible to link up” Is your data yes yes “We dot provide this data available to IRB approval may be at this time” researchers? necessary

  41. Key Informant Results (cont.) TOPICHARIRI CRACS How many data blank 6 data inquiries 0 inquiries and [Note: research proposals 0 research are handled by the IRB proposals do Committee] receive per year? Is there an IRB yes yes blank procedure? 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 your organization?

  42. RI CR Assessment: Start/End-Points 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/Communities Women & Infants. 13

  43. 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

  44. 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

  45. 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

  46. 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

  47. 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 IFs • A 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

  48. Other Study Conclusions (cont.) All = 100%; Most = 70-99%; Some = 40-69%; A few = 1-39%; None = 0% • 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 ethnicity • A 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 compliance • No information is reported on how race and ethnicity data are collected

  49. Other Study Conclusions (cont.) All = 100%; Most = 70-99%; Some = 40-69%; A few = 1-39%; None = 0% • Most hospitals (88%) do not collect information on country of origin • 1 asks for country of origin • 1 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

  50. 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

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