Presentation on theme: "Assessing Cancer Registry Systems: Challenges and Opportunities for Improving Outreach in Rhode Island Minority Populations The Rhode Island Latino Cancer."— Presentation transcript:
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 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 Force Goals 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 : Data Analysis workgroup conducted a survey to all RI Hospitals. 1 st. 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 Cancer Patients DATA SYSTEM COLLECTIONAGGREGATIONLOCAL, REGIONAL AND NATIONAL REPORTING 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 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) 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
27 Main Results -Hospital Survey (cont.) 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”
28 Key Informant Main Findings TOPIC HARIRI CRACS Race/ethnicity yes yes yes # of races most report 1 racemost report 1 race (“can most report 1 race reportedreport up to six”) Information on nosome; “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 ethnicityWhen directed by feds“We only look at race/ guidance to treated like all other When required by state ethnicity data for comply with data items required 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 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 CRs HARI RI CR 6 states pathology labs, surgical centers 21 st Century Oncology Services Cancer Patients CDC NAACCR CBTRUS CDC NAACCR IACR ACS NCQA Colorectal Screenings in Health Plans ALA BRFSS YBRFS NPCR ACS Divisions ACS Management Cancer Patients/Cancer Families?
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 NO NO 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 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 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
35 Apply the Guideline Please
36 Contact Information Alvaro M Tinajero, MD, MPH, ScM Mercedes (Betty) Bernal