Presentation on theme: "Assessing Cancer Registry Systems: Challenges and Opportunities for Improving Outreach in Rhode Island Minority Populations The Rhode Island."— Presentation transcript:
1 Assessing Cancer Registry Systems: Challenges and Opportunities for Improving Outreach in Rhode Island Minority PopulationsThe Rhode Island Latino CancerControl Task Force (LCCTF)Bridging the Health Care Divide: Researchand Programs to Eliminate Cancer DisparitiesAmerican Cancer Society ConferenceNew Orleans, LouisianaApril 18-20, 2007
2 Building a Coalition2000 General Assembly urges Rhode Island cities and towns to create municipal Cancer Control Task Forces.Established partnership among American Cancer Society, RIDOH, RICAN13 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, andto 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 The Latino Cancer Control Task Force (LCCTF) was created as a Building a CoalitionOctober 20, 2005,The Latino Cancer Control Task Force (LCCTF) was created as avolunteer-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 Islandby 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.
10 LCCTF ProjectsConduct 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.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 andinterpreted by regulatory officesThe Rhode Island Cancer RegistrySystem Study
13 The RICR System Study -Objectives Conduct an assessment of the Rhode Island Cancer Registry (RICR) SystemDetermine how race and ethnicity information of cancer patients is collected and reportedIdentify 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-uniformreporting?Other study findingsCan under-reporting be corrected?
15 Start and End-Points - RICR COLLECTIONAGGREGATIONLOCAL, REGIONAL AND NATIONAL REPORTINGDATA SYSTEMCancer PatientsCancer Patients/Cancer Families
16 What is the Guideline?The Rhode Island Department of Health requires healthproviders to collect the following demographicinformation about their patients:What is your ethnic background?Hispanic/LatinoNot Hispanic/LatinoWhat is your race? (please indicate all races that apply)American Indian or Alaskan NativeAsianBlack or African AmericanNative Hawaiian or other Pacific IslanderWhite
17 OMB 15Is there compliance in the collection and reporting of race and ethnicity?
18 RICRS Assessment - Methods Hospital Survey14 acute care hospitals13 cancer registrieshospital cancer registry data not a start orend-pointKey Informant Interviews3 key informantspublic health, health care industry andnational voluntary health organization
19 Hospital Cancer Registry Survey Unit of Analysis: hospitals (information collected via questionnaire)Population of Interest: Rhode Islanders witha diagnosis of primary cancerMain Topics: forms used for cancer patientintake, collection of cancer risk factors andrace/ethnicity information, content of databaseand access to cancer registry data, feasibility ofCR and MR linkage, frequency of reports andorganizations receiving reports (22 questions)
20 Participating Hospitals (N=14) Kent HospitalLandmark Medical CenterMemorial Hospital of Rhode IslandMiriam HospitalNaval Health Care New EnglandNewport HospitalRhode Island HospitalRoger Williams Medical CenterSouth County HospitalSt. Joseph HospitalOur Lady of Fatima HospitalVA Medical CenterWesterly HospitalWomen & 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 cancerMain 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 RegistryAssociate Director of HealthRhode Island Department of HealthDavid Rousseau, PhDDirector, Cancer Information SystemsHospital Association of Rhode IslandJimmy Parson, PhDResearch and Analysis ManagerAmerican Cancer Society, NHO
23 Analysis Hospital Survey Since sample size was small, results are presented as frequencies and percentsBecause some questions asked for more than 1 response, some figures exceed the total number of expected responsesResponses 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 ofinformationResults not presented in frequencies orpercentsInformation 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 outreachpractices
25 Main Results -Hospital Survey Summary14 Rhode Island hospitals have cancer registriesRequested participation of hospital cancer registrarsRespondents signed consent form1 initial mailing and two respondent follow-ups11 hospital cancer registries responded (79% response rate)Findings presented exclude non-respondentsRespondent follow-up ended2 hospitals share the same reporting system
26 Main Results -Hospital Survey (cont.) Race/Ethnicity/Country of OriginHow is the race of a cancer patient determined?(this was a multiple response question)In 4 hospitals (36%) patient self-reports raceIn 5 hospitals (45%) person filling form asks patientIn 1 hospital (9%) person filling form makes aguessIn 4 hospitals (36%) information obtained from MR1 hospital (9%) uses medical history/physical exam2 hospitals use a combination of methods b and d1 hospital use a combination of methods b and c
27 Main Results -Hospital Survey (cont.) Race/Ethnicity/Country of OriginHow is the ethnicity of a cancer patientdetermined? (multiple response question)3 hospitals (27%) present the patient with astandard form and the question “Are you fromHispanic or Latino origin”6 hospitals (56%) ask patients about theirethnicity in a non-standard way2 hospitals (18%) reported “unknown”
28 Key Informant Main Findings TOPIC HARI RI CR ACSRace/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 nohow is race the NCAACCR data set, butdetermined? HEALTH does not require it”Information on no no a fewhow ethnicity isdetermined?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 forcomply with data items required When requested by hospitals screening data and dataOMB 15? by law” 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?
29 Start and End-Points - RICR HospitalsCRsKent H.1Colorectal Screenings in Health PlansLandmark MC2NCQAALAMemorial H RI321st Century Oncology ServicesMiriam H.4BRFSSYBRFSCDCNaval HC NE5NAACCRNPCRHARINewport H.6CBTRUSACSRhode Island H.7Cancer PatientsCDCR. Williams MC8RI CRNAACCRSouth County H.9ACS DivisionsACS ManagementIACRSt .Joseph H.6 states10Our Lady of Fatimapathology labs, surgical centersVA MC11Westerly H.12Cancer Patients/Cancer Families?Women & Infants.13
30 Compliance with OMB 15?Findings from the hospital cancer registry surveyindicated lack of uniform collection ofinformation on race and ethnicity.Only a few hospitals ask patients to self-reporttheir race (27%) and ethnicity (27%) according tothe guidelineOnly a few hospitals (36%) collect information on 2or more racesThe Key Informant Interview revealed that mostcancer data sources only report 1 raceThere is no target date yet in RI for achievingOMB 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) 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
32 Summary of Findings 1. 2. 3. 4. 5. 6. NO 7. 8. 9. 10. 11. NO 12. 13. 188.8.131.52.NO19.45%91%30%60%90%60%40%56%44%12%100%37%??27%36%9%91%0% % % % % % % % % % %Hospital Cancer Registry SurveyKey Informant Interview
33 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
34 Can the Problem be Fixed? Our recommendations:Improve data quality at the point of entryand monitor data quality collection andreporting on key variables including race andethnicityIn the interim, promote use and refinement ofthe Spanish Surname Algorithm to determinethe extent of the undercount of Hispaniccancer cases and institutionalize disseminationof more reliable cancer statistics