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The Third National
Conference on |
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October
2 - 4, 2002, Chicago, IL |
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Preconference | Wed., October 2nd | Th., October 3rd | Fr., October 4th | | ||||||||||
Session A-4: Strategies for collecting demographic information on diverse populationsDeveloping a Culturally Appropriate Instrument for Collecting Data on Race and EthnicityRacial and ethnic health disparities have been documented for multiple "minority" groups in health, health outcomes and access to health care. Health policy makers and researchers have been able to identify these disparities because data on a person’s race and/or ethnicity is routinely collected by health care organizations, insurers and in other large research databases. This practice has begun to be questioned, however, because some researchers, policy makers and social commentators believe that these categories are meaningless and that the collection of race and ethnicity data may perpetuate health disparities. While the academic arguments for and against asking about race and ethnicity have been clearly delineated, very little is known about what patients think about these variables and how they feel when asked to identify their race and/or ethnicity. In this workshop we will describe our experience developing a culturally appropriate and acceptable instrument for collecting data on race and ethnicity at Cook County Hospital in the City of Chicago. Cook County Hospital is one the largest public hospitals in the United States and provides care to a predominantly underserved, African American and Latino patient population. In order to develop a better method of asking these questions that would provide meaningful information we used focus groups to explore the meaning of race and ethnicity to our patients and their attitudes towards questions about their race and/or ethnicity. We then used this information to devise and pilot test a data collection tool. Our goals for this workshop are to share our experience with others and to help them strategize as to how they can develop culturally appropriate instruments for use at their institutions. We will describe the challenges faced with selecting and preparing research staff, the recruitment of participants from community based settings, the translation, coding and interpretation of interview data and the development and testing of a culturally sensitive instrument. Lessons learned include the importance of having interviewers that are culturally and linguistically matched, of having multiple recruitment strategies and of having a systematic approach to data management. Techniques in the use of the grounded theory for data interpreation, use of qualitative data analysis software for data management and in cognitive interviewing for instrument testing will be discussed. In addition interview questions guides and sample instrument questions will be shared. Dr. Kee is a clinician researcher at Cook County Hospital. She is Board Certified in Obstetrics & Gynecology and maintains a teaching position at the Northwestern University Medical School. Her current research activities also include the evaluation of an intervention to improve health outcomes and increase housing stability in the homeless. Currently she provides clinical care in HIV/AIDS and in outpatient gynecology. She has worked primarily with minority and underserved populations during her entire career. Previously she served as the Medical Director for the Chicago Department of Health’s STD/HIV Prevention & Care Program during which time she conducted research in adolescent and adult women’s experience with human papilloma virus (HPV) and cervical cancer screening, in screening adolescents in a juvenile detention center for STDs and in Hepatitis B vaccine acceptance. Prior to that she completed a Robert Wood Johnson Clinical Scholar’s fellowship in research methodology at the University of Washington.
Dr. Jacobs is a Clinician-researcher and Assistant Professor of Medicine at Cook County Hospital and Rush Medical College. She attended medical school at University of California at San Francisco, trained as a general internist at Brigham and Women’s Hospital in Boston, and completed a Robert Wood Johnson Clinical Scholars Fellowship at the University of Chicago. Her research interests include access to, and cultural specificity of, medical care delivered to minority patients. She has conducted research on the impact of interpreter services on delivery of care to limited English-speaking persons and recently received a grant from the NCI to study the relationship between general trust in physicians and health care institutions and cancer screening among African-American women. In addition, she cares for patients at a neighborhood health center, works with other investigators to design culturally specific research, and teaches residents and faculty about practicing culturally sensitive medicine and the use of race and ethnicity variables in research.
Demographic Profiles: Challenges and OpportunitiesBackground: The Centers for Medicare and Medicaid Services (CMS) has mandated a quality assessment performance improvement (QAPI) project in 2003 for Medicare+Choice Organizations (M+CO). This national managed care project provides health plans with the option to address either a) clinical health care disparities (CHCD) or b) culturally and linguistically appropriate services (CLAS). The Quality Improvement Organizations (QIO, formerly Peer Review Organizations) for Medicare can assist the M+COs on this project. One QIO is working within the state to find a method of identifying each M+CO’s racial and ethnic composition of enrollees. Health plans do not routinely collect race and ethnicity for their members on enrollment because of concerns that collection of this data will be deemed discriminatory. Surveying members to collect this information is costly and may be incomplete depending on response rates. In this presentation, we will demonstrate a strategy to utilize existing data sources to develop a "Health Plan Profile" on race and ethnicity to provide each M+CO an approximation of the M+CO’s population. This profile can be the first step in identifying opportunities to improve care and services to population groups. This project will provide a population profile, but will not provide data on individual members. Objectives: Challenges for demographic profiling will be highlighted.
Steps to generate demographic profiles: Demographic profiles will be created using multiple data sources in order to approximate the race and ethnicity of the enrollee population.
Recommendations: Health plans can develop demographic profiles as the first step to improve care and service for under-served or specific racial and ethnic groups. The limitations of utilizing multiple data sources to develop profiles include logistic issues, data validity concerns, and sensitivity regarding confidentiality and privacy. However, collecting incomplete or biased data or not having any data on race and ethnicity can lead to inaccurate assumptions and conclusions, thus adversely impacting care and service delivery. The goal of developing health plan profiles to approximate member race and ethnicity is to link these variables with health outcomes and utilization patterns. Ultimately the goal is to improve care and decrease health care disparities.
Kelle D. Eason, MPH is a health services analyst for the Community Based Quality Improvement Team at CMRI. Currently Kelle is responsible for the data analysis aspect for the Congestive Heart Failure, Breast Cancer Screening and Cultural Competency projects of the Quality Improvement System for Managed Care (QISMC). Kelle obtained her Masters in Public Health from George Washington University where she specialized in the study of Health Education and Epidemiology. Her Masters thesis involved the evaluation of diabetes care provided to a group of uninsured Latin American immigrants in Northern Virginia. Ms. Eason is familiar with research in health care disparities and in the use of various public databases and their use in epidemiologic research.
Merry Tantaros, RN, MA, CPHQ is a project manager in the Managed Care department at CMRI Currently she oversees several national QAPI projects including Pneumonia, Breast Cancer Screening and Cultural Competence. She came to CMRI in 1997 to lead a pilot project to re-design the data collection and medical review procedures for handling Medicare beneficiary complaints. The revised process has been adopted by CMS as a national model. Ms. Tantaros has extensive experience in Managed Care both at the medical group and health plan level. Her clinical experience includes training as a specialist in home health, neurology and physical rehabilitation. She is also experienced in cross-cultural nursing, international healthcare and healthcare marketing. She has a BS in Nursing and a Master of Arts in Organizational Management from University of Phoenix.
Dr. Susan Merrill is an epidemiologist with CMRI, the Medicare quality improvement organization for California. Dr. Merrill provides analytical expertise and designs evaluation plans for CMRI's breast cancer, diabetes, immunization, and women's health projects. She serves on several advisory groups for health entities in California and has published numerous papers on health and aging. |
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| As with the rest of Diversity Rx, this section
is a work in progress and we welcome information on other efforts, programs,
and reports that will expand upon the information offered here. Please
let us know if you have other examples to include here. |
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Diversity Rx is sponsored by: |
 The National Conference of State Legislatures |
 Resources for Cross Cultural Health Care |
 Henry J. Kaiser Family Foundation |
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