Methodological Issues and Data Collection

General Information

• Bolin JN. Community-Based Participatory Research – Assessing a Community’s Health Status Using Readily Available Secondary Data. 2007; Presentation file. — This presentation summarizes the results of analysis of secondary data to provide information on baseline health status of the Brazos Valley Region of Texas.

• Israel BA, Eng E, Schulz AJ, Parker EA (eds). Methods in Community-Based Participatory Research for Health. 2005; San Francisco: Jossey-Bass. — This text provides comprehensive examinations of CBPR study designs, data collection and analysis methods, and innovative partnership structures and process methods.

• Israel BA, Schulz AJ, Parker EA, Becker AB. Review of Community-Based Research: Assessing Partnership Approaches to Improve Public Health. Annual Review of Public Health. 1998; 10: 173-202. — This article assesses a variety of CBPR procedures and principles for effective work in improving public health.

• Wang C, Burris MA. Photovoice: Concept, Methodology, and Use for Participatory Needs Assessment. Health Education & Behavior. 1997; 24: 369-87. — The article explores the use of photovoice to public health promotion, including methods and analysis.

Race, Ethnicity, and Primary Language

• Health Research & Educational Trust. Issue Brief: Collection of Race, Ethnicity, and Primary Language Data: Tools to Improve Quality of Care and Reduce Health Care Disparities (2005) — This document summarizes the importance of using data to improve quality of care and reduce health care disparities.

• Hasnain-Wynia R., Pierce D, and Pittman MA. Who, When, and How: The Current State of Race, Ethnicity, and Primary Language Data Collection in Hospitals. 2004; The Commonwealth Fund. — This article provides an overview of race, ethnicity and primary language data collection in hospitals, and is particularly helpful for health centers involved in health information exchange initiatives.

• Williams D. The Monitoring of Racial/Ethnic Status in the USA: Data Quality Issues. Ethnicity & Health. 1999; 4(3): 121-137. — This article reviews the assessment of racial and ethnic identification in the major data collection system of the US Department of Health and Human Services.

• Health Research & Educational Trust. Presentation to Staff: Nuts and Bolts of Collecting Race, Ethnicity, and Primary Language Information from Patients. 2007. — This presentation provides a protocol for conducting race/ethnicity and primary language data collection.

• Braunstein JB, Sherber NS, Schulman SP, Ding EL, Powe NR. Race, Medical Researcher Distrust, Perceived Harm, and Willingness to Participate in Cardiovascular Prevention Trials. Medicine. 2008; 81(1): 1-9. — This study found that African Americans expressed greater concerns about experiencing harm from participating in clinical trials and greater distrust towards medical researchers than white participants.

• Reid CE, Brief E, LeDrew R. Our Common Ground: Cultivating Women’s Health Through Community-Based Research. 2009; Vancouver: Women’s Health Research Network. — The Women’s Health Research Network published this guide to provide users with a better understanding of the community-based research process and how it can be applied to research at various levels.

• Two Feathers K, Kieffer EC, Palmisano G, Anderson M, et al. Racial and Ethnic Approaches to Community Health (REACH) Detroit Partnership: Improving Diabetes-Related Outcomes Among African-American and Latino Adults. Am J Public Health. 2005; 95(9):1552-60. — This study demonstrates the effectiveness of a community-based, culturally tailored diabetes intervention for African American and Latino adults in Detroit, Michigan.

• Wendler D, Kington R, Madans J, Van Wye G, Christ-Schmidt H, Pratt LA, et al. Are Racial and Ethnic Minorities Less Willing to Participate in Health Research? PLoS Med. 2006; 3(2):e19. — This article finds that African-Americans and Hispanics are no less willing to participate in health research than non-Hispanic whites. Further, it suggests we focus on ensuring equal access to health research for all groups.

• Davis RM, Hitch AD, Nichols M, Rizci A, Salaam M, Mayer-Davis EJ. A Collaborative Approach to the Recruitment and Retention of Minority Patients with Diabetes in Rural Community Health Centers. Contemp Clin Trials. 2009; 30(1): 63-70. — This article discusses a successful approach to recruiting and retaining ethnically diverse study participants in rural South Carolina.

Evaluations

• Butterfoss FD. Process Evaluation for Community Participation. Annual Review of Public Health. 2006; 27:323-40. — This article examines the importance of process evaluation to examine community participation’s role in health and social change outcomes.

• Health Outreach Partners (formerly Farmworker Health Service, Inc). Data Collection Tools for Evaluation. — This easy-to-read table offers various evaluation mechanism definitions, benefits, and limitations.

• Sim S-C. Why Should Nonprofits Care? The Journal for Nonprofit Managers. 2009; 21(6): 1-5. — This article discusses the importance of evaluations to an organization’s work.

Sample Tools

• Robert Wood Johnson Foundation: Using Qualitative Methods in Healthcare Research — This web-based guide provides methods for researchers developing, evaluating, and engaging in qualitative research projects in healthcare settings.

• Academy Health: Health Services Research (HSR) Methods — This site provides an introduction, data sources, and other useful resources for conducting Health Services Research (HSR).

• Eau Claire Community Health Center: Focus Group Consent Form — This document illustrates what important disclosures, items, and information to include, and is a useful template for those wishing to conduct focus groups.

• Health Research and Educational Trust (HRET) Disparities Toolkit — This web-based toolkit offers resources for hospitals, health systems, clinics and health plans for systematic data collection of race, ethicity and primary language data from patients.

• Urban Institute: Research Toolkit — This toolkit, developed by the Urban Institute, provides an introduction to various qualitative and quantitative methods for implementing and evaluating research. It includes definitions and samples for methods such as focus groups, interviews, cost-benefit analysis, and regressions.

• Data Request Form – Waianae Coast Comprehensive Health Center (WCCHC) — This document is a useful tool for organizations to better understand the specific data elements and formats that are being requested of them.

• American’s Health Insurance Plans. Tools to Address Disparities in Health: Data as Building Blocks for Changes. 2005; Washington, D.C. — This document provides a data collection toolkit for health insurance plans and health care organizations.