Developing survey research infrastructure at an Historically Black College/University to address health disparities.
Abstract: This article describes the development of the Center for Survey Research at Shaw University, a Historically Black College and University (HBCU), and its efforts to build a data collection infrastructure that addresses issues germane to health disparities research in the African American population. Academic institutions that are similar to Shaw in size, mission, and background can use the Project EXPORT collaboration and the Center for Survey Research as models for establishing their own research infrastructure and subsequent survey center in order to address health disparities through the use of survey methodology.
Subject: African American universities and colleges
African Americans
Infrastructure (Economics)
Authors: Howard, Daniel L.
Boyd, Carlton L.
Kalsbeek, Bill
Godley, Paul A.
Pub Date: 06/22/2010
Publication: Name: American Journal of Health Studies Publisher: American Journal of Health Studies Audience: Professional Format: Magazine/Journal Subject: Health Copyright: COPYRIGHT 2010 American Journal of Health Studies ISSN: 1090-0500
Issue: Date: Summer, 2010 Source Volume: 25 Source Issue: 3
Accession Number: 308741512
Full Text: INTRODUCTION

Inequalities in health outcomes and health care persist between racial, ethnic, and socioeconomic groups in the United States with African Americans suffering greatly from these disparities. For diseases such as cancer, heart disease, stroke, HIV/AIDS and diabetes, the morbidity and mortality rates for African Americans far exceed that of white Americans (Hayes & Boone, 2001). Research has shown that these adverse health outcomes are inextricably linked with lifestyle choices, personal decisions, resources, and environmental factors and are influenced by culture, history, and values (Sullivan-Bolyai et al., 2005). Powell and Gilliss state that the urgent desire to correct the ill-distributed health profile for minorities in the United States is counterbalanced by the reality that complex cultural, historical, and value-laden traditions contribute to the habits and lifestyle choices that are ultimately responsible for health and health care outcomes (Powell & Gillis, 2005).

To meet the objective of eliminating these disparities, research studies must incorporate a broad range of methodological approaches and cultural issues with regard to the collection of data from racial, ethnic, and socioeconomic minorities and other hard-to-reach populations (Keppel et al., 2005; Ramirez et al., 2005; Stewart, Napoles-Springer, 2003; Sue, Dhindsa, 2006). Examples of these methodological approaches include 1) mixed-mode and mixed-method approaches to increase participation of otherwise hard-to-reach groups in order to provide context to quantitative data, 2) community-based participatory research, and 3) collection of data across the life-course (Bulateo, Anderson, 2004; Halfon, Hochstein, 2002; Zarit, Pearlin, 2005).

Examples of cultural issues include the formulation of valid constructs to measure health disparities, (i.e., those that consider comparisons of subgroups as part of the research design and data analysis plan), and development of valid and reliable scales to properly assess ethnic minority subgroups.

To properly measure health disparities, one must assess the differences among racial/ethnic subgroups and the data being compared must be obtained using a uniformed framework approach, so that it is accurate and complete.

HBCUs were established primarily for the socialization and education of African-Americans who for a long time in American history, were not allowed to attend majority institutions. Due to their connection with the African American community, HBCUs are uniquely positioned to have an understanding of cultural and social norms and issues related to data collection, data analysis, translation, and dissemination that larger, research-intensive institutions may not possess (Carey & Howard, 2007). Recognition and utilization of this potential has led to research collaborations between universities which have been seen as ideally suited partnerships in order to develop sustainable solutions to improve health outcomes. Carey et al., 2007). Because health disparities affect African Americans in such a disproportionate rate, the level of involvement of Historically Black Colleges and Universities (HBCUs) and their researchers should be increased and more specifically, they should have a major role in the development of research methodologies and the collection of data for the elimination of these disparities.

Shaw University (Shaw) was founded in 1865 and is located in Raleigh, North Carolina. Primary a teaching institution, Shaw has a rich history of addressing the educational, social and health concerns of its surrounding community and is the oldest HBCU in the south. Though no longer operational, Shaw was home to the first medical school in the Unites States to offer a four-year curriculum to its students and throughout its thirty-six year history between 1882 and 1918, nearly four hundred graduating physicians provided medical services to the underserved.

In 2000, Shaw and the University of North Carolina at Chapel Hill (UNC-CH), a research intensive institution located in Chapel Hill, began a formal collaboration to build a mutually beneficial portfolio of educational and research endeavors and, in 2002, received the National Institutes of Health (NIH) National Center on Minority Health and Disparities (NCMHD) Project EXPORT grant (Carey et al., 2007). For a collaboration such as this, it was important to plan and design mutually beneficial programs and outcomes, engage in an intentional process to build a shared vision, design a plan for implementation, hold each other accountable, and determine ways in which both institutions would benefit (Johnson, 2005). Known as the Carolina-Shaw Partnership for the Elimination of Health Disparities (US PHD Center), the objectives of the collaboration were to facilitate Shaw's emergence as a research university, train junior faculty and students in health disparities research, and to explore the use of novel faith based initiatives to address health disparities (Walker et al., 2007). The Carolina-Shaw Partnership was unique in that its focus was on infrastructure-building at Shaw University to increase its capacity to conduct health disparity research through the establishment of the Institute for Health, Social, and Community Research (IHSCR).

The IHSCR is an umbrella unit for the health disparities research being conducted at Shaw. The Center for Survey Research (CSR) is one of several units comprised within the IHSCR. The goals of the CSR were to 1) increase external support to facilitate the development of both substantive and methodological capacities to conduct research; 2) utilize this capacity to conduct research on health and social issues relevant to African Americans and other ethnic-minority populations; 3) provide training and support for faculty, students and staff at Shaw University in the areas of survey and research methodology; 4) serve the Shaw community by enhancing the on-campus capacity to conduct high quality research; 5) incorporate commercial survey operations to diversify outreach and enhance links to regional industry, and 6) disseminate the Center's research productivity. The following description of the activities involved in developing a Center of Survey Research at Shaw University may benefit other institutions of higher learning that wish to develop CSRs.

BUILDING THE CENTER FOR SURVEY RESEARCH

One of the specific aims of the Carolina--Shaw Partnership was to build survey research infrastructure at Shaw University and a survey research unit that would serve as the flagship for all survey-related responsibilities for Project EXPORT research that took place at the IHSCR as well as provide data collection and project management services to business owners and non-profit agencies. Early development of this research infrastructure was largely modeled after the creation of a similar campus research organization, the Survey Research Unit (SRU) at UNC-CH in the early 1990s.

The first step in the establishment of survey research infrastructure at the IHSCR was hiring qualified personnel and staff development. Pertinent positions that needed to be filled included the Director, Survey Research Associate, Telephone Interviewers, Student Assistants and Student Interns. The role of the Director was to manage all the activities of the Center including marketing and outreach, contract negotiation with clients, maintaining high quality technical support for Center operations, staff training and skill-building, timely completion of all contracted activities and deliverables, and preparation of reports and other documents related to Center activities. The Survey Research Associate's responsibilities included interviewer recruitment, training, supervision and evaluation, protocol development for all contracted activities, quality control, troubleshooting technical and organizational problems arising during the interview session, staff and resource projections for contracted services, and timely completion of all interview activities. Student Assistants and interns worked in the call center conducting interviews for the various studies.

The capacity for the IHSCR to collect data and develop research methodologies was enhanced by the mentorship and training from the CSR, SRU, and Department of Biostatistics at UNC-Chapel Hill. Consultation was also provided on such issues as human subjects' protection training for survey research, telephone survey methodology, survey research business development and computer-assisted telephone interviewing operations. CSR staff members took advantage of several areas of training and development including the Certificate Program in Survey Methodology at UNC-Chapel Hill and courses in survey computing and analysis and statistics. CSR staff also participated in short courses such as: Nonresponse Bias Studies, Subjective Measurement in Surveys, Multi-item Scales & Factor Analysis, Response Rates on Telephone Surveys, Web Survey Design, and Introduction to Survey Quality.

Another important component in building the CSR was finding a location with enough space to house a fully operational call center. Initially, the CSR was housed in an off-campus site in close proximity to the Shaw University campus until the federally funded 32,583-square-foot IHSCR main facility was built. When the complex was completed in 2008, the CSR was moved into IHSCR office space outfitted with twenty-four calling stations equipped with computers, telephones, and noise cancelling headsets. The CSR was strategically linked to the Center of Biostatistics and Data Management (CBDM), another unit of the IHSCR, drawing on its expertise in reliability and validity testing of survey instruments.

Because computer-assisted telephone interviewing (CATI) is the predominant mode of survey data collection, the CSR staff formed a CATI evaluation group to compare several software packages and to make a purchasing decision. The group decided on the WinCati 4.2/Sensus software by Sawtooth Technologies, Inc. WinCati 4.2/Sensus was selected because the system allowed for conducting surveys in telephone only, web only, or mixed-mode formats. Staff members participated in training on the software conducted by Praxis Computer Research. Biostatisticians from the IHSCR CBDM were trained to learn the interactions between data entry, data management and survey data analysis modules of the software. This process helped the CBDM to be fully versed in the capabilities of WinCati and could assist in designing effective data collective strategies for various survey operations undertaken by the CSR.

For the first two years as the infrastructure for the CSR developed, the IHSCR relied on a local information technical support company to set up internet access and support, network administration, and for server maintenance. This company also provided consultation on computer and other purchases. As the CSR became more stabilized and expanded, the need for an IHSCR-based information technical support person increased, so an IT specialist was hired to maintain technical support for the CSR and the other units within the IHSCR including the CBDM. The emergence of the CSR and the CBDM coincided in that the both units were able to assist research clients with survey design, formatting, CATI development, database development, pre-testing for reliability and validity, data entry, data analysis, and information technology support.

The Center for Survey Research (CSR) was developed from a core of the UNC-Shaw Partnership for the Elimination of Health Disparities (Project EXPORT) (grant P60 MD00239) funded by NIH NCMHD in 2002. The mission of the CSR is to support the IHSCR in its goal to become "a national leader in the multidisciplinary empirical investigation of diverse issues that affect the health and well being of minorities, particularly African-Americans, and their families, and the communities in which they live." The CSR has the capacity to design surveys, administer surveys by phone, and mail self-reported surveys to potential participants, the CSR uses the Win Cati4.2/Sensus software to administer computer-assisted telephone interviews (CATI) and also has the capacity to conduct web-based surveys. In cooperation with the Center for Biostatistics and Data Management, the CSR is developing a pretesting laboratory for the evaluation of survey instruments for reliability and validity. Pre-testing techniques include focus groups, behavior coding, and cognitive interviewing. The CSR solicits contracts at the local, state, and national levels with the aim of becoming fully self-supported.

The CSR is composed of 24 calling stations and a supervisor station, making the CSR the largest calling room at an HBCU in the nation. Each sound absorbent calling station is equipped with a personal computer, NEC Electra Elite IPK telephone, and a Plantronics Supra noise-canceling headset. Immediate plans include administering virtual surveys. The CSR has dedicated space for administrative staff to monitor Core activities and perform needed operations including production, duplication, and assembly of survey instruments; assembly and packaging of surveys for mail; receipt, sorting, and review of surveys for data entry; and secured storage of documents consistent with records retention protocol. University students and local community members are hired and trained as professional Interviewers. All interview staff participates in a comprehensive training, monitoring, and evaluation program.

Students and interested faculty receive training on how to administer surveys through CSR's Interviewer Training Program. The Interviewer Training Program is based on the standard principles and techniques used in the survey research industry. The main components of the training program include 1) basic interviewing techniques, 2) protection of human research subjects, 3) computer-assisted telephone interviewing, and 4) project specific training. Students and interested faculty will participate in a four-day training in which they will first learn how to administer surveys. After training in the basic techniques, they then receive project specific training. Specifically, interested faculty and students receive training on the background on minority health and racial health disparities research, education and awareness, and community-based participatory research approaches to the design of research and the development of survey items. Students and faculty receive training in quantitative and qualitative data collection. In order to meet the requirements of the Shaw University Institutional Review Board, each interested faculty member and student are trained in the protection of human research subjects. After general training and project specific training, students are then be trained in the use of computer-assisted interviewing using the WinCati 4.2 Interviewer application. Interested faculty and students are trained to code and enter survey data based on the CBDM's data management conventions. They are trained in refusal conversion, survey pre-testing methods, such as focus groups, behavior coding and cognitive interviewing, and verification of interviews. Central to the students' success is the opportunity to practice what they have learned. Students and interested faculty are expected to pass a post-training quiz in order to be certified to begin data collection. Students and interested faculty practice several mock interviews before interviewing actual respondents. They receive feedback during training to reinforce their knowledge and to build their confidence in conducting interviews. The Head Interviewer oversees the training and monitoring of student interviewers during training and during each calling session. A Field Supervisor oversees the work of students conducting face-to-face interviews.

Having a Research Analyst for the CSR is necessary. The Research Analyst should have a Master's degree in Information Systems, Programming or Data analysis, with familiarity with CATI software and experience with Sawtooth WinCATI should be preferred. The Analyst should also have an understanding of statistical techniques for the social sciences. The Analyst will should be able to perform programming and analysis tasks using, WinCati, Excel, Access, and other software as appropriate. In addition, the Analyst should be able to:

* Program questionnaires in Ci3 and/or Sensus.

* Set up telephone interview studies in WinCATI.

* Set up databases in Access.

* Processes, loads, and manages sample for use in WinCATI or in mail-out surveys.

* Merge, modify, and edit data files as needed for analysis or for use as sampling databases.

* Prepare and label SAS data files for analysis and reporting.

* Analyze survey results data, including frequencies, cross tabulations, means tables, multivariate analyses, and tests of statistical significance.

* Prepare graphs and tables in Excel, Word, and other software as appropriate.

BUILDING COLLABORATIONS AND RELATIONSHIPS

As originally conceived in the Project EXPORT grant, the CSR would be a shared resource for the EXPORT center and the faculty, staff, and students of Shaw University and intended to become financially self-sufficient. In order to pursue collaborations and market itself, the CSR created business cards, a web site, an informational packet, a brochure and a business plan. Since the CSR is a non-profit academic center, marketing efforts have not been as aggressive as commercial organizations but the CSR has built several collaborative relationships with clients within and outside Shaw University. Because the CSR is part of a research institute, the necessity to seek independent outside clients has decreased, as more multi-million dollar research grants have been funded.

The CSR has been an asset to investigators who require services in sampling and questionnaire design, interviewing, data entry and analysis for their research studies. The initial contract the CSR received was Project CONNECT; the purpose of the study was to build trusting relationships with the African American community that would lead to meaningful participation in research germane to health disparities. Project CONNECT identified individuals who were interested in participating in health disparities research studies and developed a registry of potential volunteers. The CSR worked with Project CONNECT on every aspect of the venture and it proved to be a beneficial first project because it allowed the CSR to fully test the capacity of the unit and identify areas of improvement for future projects. The CSR conducted telephone recruitment of 900 individuals from four North Carolina counties--Durham, Wake, Guilford and Mecklenburg. A significant amount of data was gathered by the CSR and was used in a number of presentations, publications and grant applications. This experience also helped the CSR develop its capacity to conduct opinion polls.

The CSR has provided consultation to members of Shaw's divinity school regarding the collection of data from faith-based organizations and provided survey methodology and collection services for a study involving congregational health assessment dissemination. The opportunity to work with Shaw and faith-based organizations supports the specific aim of the EXPORT grant to provide the on-campus capacity to collect data to both Shaw University and the community served by Shaw. The CSR has partnered with state public health agencies, local community-based organizations and with several universities on health disparities studies giving Shaw the opportunity to expand its research activities in partnership with large research institutions. Along with the Project CONECT and the Shaw University Divinity School research studies, listed below is an abbreviated list of the research projects where the services of the CSR have been utilized:

* Shaw University Training Networks for National Library of Medicine Online (NLM) Resources. The Center for Survey Research partnered with the Department of Computer Science at Shaw University on the development of data collection and evaluation instruments with the purpose of raising public awareness of how to take advantage of the NLM's online resources to intervene in the health disparities that disproportionately affect African Americans.

* Shaw-Duke Maternal and Infant Mortality Initiative: Interventions to Improve Outcomes Among Pregnant Medicaid Recipients (MIMI). The CSR designed data collection and evaluation instruments for the study in collaboration with Duke University. The aim of the study was to identify and describe cultural values and beliefs that influence and shape how families perceive and give meaning to caregiving.

* Body and Soul: A Celebration of Healthy Eating and Living. The CSR developed data collection instruments, session evaluation forms, developed a database for the project, and conducted follow-up calls for the mailed letter and informational sessions. The goal of the study was to assess the educational and communication preferences of faith-based organizations.

* Developing a Pilot Intervention to Increase Child Mental Health Service Utilization by African-American Families (TASK). The CSR developed a self-administered questionnaire and conducted telephone interviews with parents of children with mental health diagnoses.

*Data Collection/Data Distribution Network ([DC.sup.2]). The CSR provided survey methodology services and developed a data collection instrument to be disseminated in African American churches to assess their health needs, priorities and concerns.

* Social Constructions of Cultural Meanings and Reasons for Caregiving in African American Families. The purpose of the study was to help reduce adverse maternal and infant outcomes for pregnant African American Medicaid recipients. The CSR conducted telephone interviews and analyzed qualitative data using thematic analysis.

* Disparities in Prostate Cancer Treatment Modality and Quality of Life: Baseline Study. The CSR recruited participants and conducted telephone interviews with African American prostate cancer patients with the purpose of investigating the effects of race, economic status, and psycho-social factors on the quality of life of men diagnosed with prostate cancer.

* Effects of Informed Decision-making and Knowledge on Utilization of Prostate Cancer Screening Procedures of the Sons of Men Who Were Diagnosed with Prostate Cancer. The CSR recruited participants and conducted telephone interviews with the sons of men who had prostate cancer to better understand how personal experiences and risk perception impact lifestyle choices and screening behaviors of adult men.

* Development of an Organizational Readiness to Change Instrument for Black Churches. The CSR conducted telephone interviews with African American pastors to assess their church's readiness to participate in health disparities research.

* Sermon-based Messages for HIV Prevention. The CSR conducted telephone interviews with pastors to determine their willingness to develop sermons to address HIV in the African American community.

CHALLENGES

The resources that the Center for Survey Research has available for researchers both at Shaw and outside the university has grown significantly since the unit was created but not without some challenges. Specifically, the most considerable challenge for the CSR initially was locating adequate space on Shaw's campus to house the CSR. It was important for the CSR to be located on campus to facilitate easy access for Shaw researchers, students, etc. to assist in the development of research agendas and survey methodologies for their studies, as well as fully identify the CSR as part of the university. This was ratified by the construction of the IHSCR building, a 32,583 square foot complex funded by NIH National Center for Research Resources, housed on the campus of Shaw University. Another challenge has been the development and maintenance of efficiency throughout the constant evolution of tools and methods used for data collection and analysis. Ensuring that CSR personnel remain proficient with new technologies through trainings, seminars and workshops allows for the staff" to improve their expertise and be better prepared to work in a setting where their capacity to measure, collect, and assess accurate data are key. An additional challenge the CSR has faced has been increasing its visibility and making known its capabilities to attract contracts with researchers within and outside of Shaw's campus. To address this, several focus groups were planned to assess the need for and interest among Shaw University faculty for a series of methodology workshops or seminars on data collection research methods. The impetus for the focus groups was a desire to strengthen the unit's interaction with the Shaw faculty. Interest among the faculty was almost non-existent and spoke to the lack of buy-in by the faculty possibly due to time constraints placed on faculty given the heavy teaching loads or a lack of career focus. Additional interviews and/or focus groups are needed to assess interest in CSR services among the commercial community. Other challenges included maintaining the CSR after the initial Project EXPORT grant ended and adjusting to fluctuating funding patterns. The CSR had to be self-sustaining and could not expect financial support from the University. It was necessary that funding for the CSR staff and infrastructure was considered in all new grant funding opportunities.

CONCLUSIONS

Since 2002, the Institute for Health, Social, and Community Research has been able to bring more than $25 million dollars in grant funding for health disparities research to Shaw University. One of the reasons why Shaw has been able to compete for federal research dollars is because of its capability to conduct survey research. Due to the collaboration between Shaw and UNC-CH, an independent and functional Center for Survey Research has been established at Shaw and has been key in the development of research designs and instruments for many IHSCR related health disparity research studies and projects by outside clients. The development of the CSR has enhanced both research and academics at Shaw University by providing opportunities for faculty development, student survey research training and jobs, and increased funding opportunities for principal investigators.

According to Jenerette et al (2008), the outcome of a collaboration can be seen in subsequent health disparities research that builds upon the pilot work and, in the case of the CSR, the growth of the center is reflected in the number of contracts it has received. The CSR has achieved success by building its methodological capability, establishing several key collaborations and relationships, and building its technical capabilities through multiple funding sources. Using the partnership between the University of North Carolina at Chapel Hill and Shaw University as a catalyst, the CSR has positioned itself to become a leader in the innovation of survey methodologies that are particularly relevant for health disparities research. Academic institutions that are similar to Shaw in size, mission, and background can use the Project EXPORT collaboration and the Center for Survey Research as models for establishing their own research infrastructure and subsequent survey center in order to address health disparities through the use of survey methodology.

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Daniel L. Howard, PhD

Carlton L. Boyd, MPH

Bill Kalsbeek, PhD

Paul A. Godley, MD, PhD

Daniel L. Howard, PhD, is affiliated with the Robert Wood Johnson Foundation Center for Health Policy, Meharry Medical College. 1005 D.B. Todd Jr. Blvd., Nashville, TN 37208 Tel: 615-327-6383; Email: dhoward@mmc.edu. Carlton L. Boyd, MPH. is affiliated with the Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill2. 725 Martin Luther King Jr. Blvd., CB# 7590, Chapel Hill, NC 27599. Tel: 919-843-3403; Email: cboyd@schsr.unc.edu. Bill Kalsbeek, PhD. is affiliated with the Department of Statistics, University of North Carolina at Chapel Hill3. 730 Martin Luther King Jr. Blvd, CB# 2400, Chapel Hill, NC 27599. Tel: 919-962-3248; email: kalsbeek@email.unc.edu. Paul A. Godley, MD, PhD. is affiliated with the School of Medicine, University of North Carolina at Chapel Hill4. 3009 Old Clinic Building, CB #7305, Chapel Hill, NC 27599. Tel: 919-966-4431; email: paul_godley@med.unc.edu.
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