AHRQ initiated a research program that awarded eight grants in September 2010 to improve statewide all-payer, hospital-based encounter-level data (inpatient, emergency department, and ambulatory surgery) for the purpose of both producing the evidence base for comparative effectiveness and evaluating efforts to implement comparative effectiveness where the evidence already exists. Two types of grants were implemented under this research program to improve state data by:

• Enhancing the clinical content of the state databases in Florida, Hawaii, Minnesota, New Jersey, and New York
  
• Improving the race/ethnicity data in state databases in California, New Mexico, and the Northwest region (Idaho, Oregon, and Washington)

The grant projects were conducted over a 3-year period. Information about lessons learned and tools for other state data organizations to adopt the improvements are being disseminated via this toolkit as well as a companion toolkit on clinical content enhancement.

• California Grantee
  
• New Mexico Grantee
  
• Northwest Region Grantee

GRANT SUMMARY: Investigators from the University of California, Los Angeles, in collaboration with the California Office of Statewide Health Planning and Development (OSHPD), have improved the reliability, validity, and completeness of self-reported race, ethnicity, and primary language (R/E/L) data provided by hospitals in three OSHPD databases. The project performed a baseline assessment of data collection, reporting, and accuracy in California hospitals and in comparison states, and improved hospital R/E/L data via development of standardized materials, educational intervention, auditing, and follow-up. The researchers linked OSHPD databases to other state agency data and used statistical approaches to authenticate their efforts. The project is expected to make substantial, sustainable improvements to the reporting of R/E/L among patients in California’s hospitals.

UCLA Department of General Internal Medicine
Principal Investigator: David S. Zingmond, MD, PhD
Investigators:
Ninez Ponce, PhD, MPP
Scarlett Lin Gomez, PhD
Romana Hasnain-Wynia, PhD
Allen Fremont, MD, PhD
Mark Elliot, PhD
Project Coordinator: Punam Parikh, MPH

California Office of Statewide Health Planning and Development (OSPHD)
Investigators:
Jonathan Teague
Cristal Schoenfelder
Robyn Strong
Rob Fox 

Patient-Centered Outcomes Research Institute (PCORI)
Investigator: Romana Hasnain-Wynia 

Cancer Prevention Institute of California (CPIC)
Investigators:
Scarlett Lin Gomez
Sally Glaser
Daphne Lichtensztajn
Laura Allen

Los Angeles County Cancer Surveillance Program
Investigator: Lihua Liu

RAND
Investigators:
Allen Fremont
Mark Elliot

Gomez SL, Lichtensztajn DY, Parikh P, Hasnain-Wynia R, Ponce N, Zingmond D. "Hospital practices in the collection of patient race, ethnicity, and language data: a statewide survey, California, 2011." Journal of Health Care for the Poor and Underserved, 2014.

Understanding Drivers of Health Care Disparities and Developing Targeted Interventions (PDF file, 522 KB; HTML)

A presentation that discusses why disparities in healthcare matter, the intersection of quality and disparities, R/E/L data collection, and interventions.

Why Should Hospitals Collect R/E/L Data? (PDF file, 26 KB; HTML)

Targeted at hospital executives and upper and middle managers, this document outlines the purposes and legal justification for collecting patient R/E/L information, and details initiatives and legislation (both enacted and proposed) that aim to promote and standardize data collection.

Race, Ethnicity, and Language Data Collection: Nuts and Bolts (PDF file, 180 KB; HTML)

A presentation on training staff and informing leadership about the importance of effectively collecting high quality R/E/L data that meet state requirements and can be used to improve quality in hospitals.

FAQs about the Collection of Patient Race, Ethnicity, and Language—For Patients (PDF file, 122 KB; HTML)

Provides answers to questions that are frequently asked by patients during the admission/registration process. Hospitals can attach this list to registration forms, offer it as a handout to patients, or post it in the waiting area.

Why Should Hospitals Collect Patient Race, Ethnicity, and Language? (PDF file, 163 KB; HTML)

Provides explanations to admissions/registration staff on the need to update and standardize how race, ethnicity, and language preference data is collected and recorded. It outlines the reasoning behind collecting this information directly from the patients themselves, and highlights the important role that frontline staff have in recording complete, high quality data.

Frequently Asked Questions about Collecting R/E/L Data (PDF file, 37 KB; HTML)

Addresses data collection, staff burden, definitions of R/E/L terms, OSHPD codes, and helpful tools.

FAQs about Collecting Patient Race, Ethnicity, and Language—For Hospital Staff (PDF file, 129 KB; HTML)

A document that provides answers to questions that patients frequently ask during the registration process.

Script for Hospital Staff to Explain to Patients Why They are Asking for R/E/L Information (PDF file, 160 KB; HTML)

For use by hospital admissions/registration staff when asking patients to provide their R/E/L information. Patients may be uncomfortable when asked about these topics and the script allows staff to explain to the patient the importance and purpose of collecting this information and to ensure them of its confidentiality.

Patient Demographics Questionnaire–Staff Administered (PDF file, 28 KB; HTML)

This survey tool is for use by admissions and registration staff for collecting R/E/L information from patients in person or over the phone. The document contains two pages of instructions to the data collector, a one-page introductory script explaining why the R/E/L information is being collected, followed by a one-page questionnaire.

Patient Demographics Questionnaire–Self Administered (PDF file, 27 KB; HTML)

The target audience of this tool is patients and their families. The document contains a two-page questionnaire that the patient fills out, preceded by two pages of instructions for data collectors.

New Measures to Access the Quality of Race/Ethnicity Reporting in State Databases (PDF file, 170 KB; HTML)

A presentation on a project to develop validated audit measures for race/ethnicity reporting that can be used for any state’s statewide databases.

GRANT SUMMARY: The New Mexico Department of Health and the Health Policy Commission have been improving the quality of race and ethnicity data in hospital discharge and emergency department databases by revising the New Mexico administrative code to mandate race, ethnicity, and tribal identifier data reporting. The change was supported with redeveloped hospital procedures, training and compliance plans, patient education, and data collection; and by implementing verification and tracking mechanisms such as post-discharge surveys and electronic linkage of hospital records with birth certificates and Indian Health Service records. In addition, the project is collecting tribal identifier data and has established methods and procedures for tribal identifiers as a model for other states.

New Mexico Department of Health
Principal Investigator: Michael Landen, MD
Investigator: Nichole Katz, MPH

Collection and Use of Race and Ethnicity Data for Discharge Data Reporting Systems: The New Mexico Race/Ethnicity Data Project (PDF file, 1.4 MB; HTML)

A presentation describing the purpose of the project, the NM Hospital Inpatient Discharge Database (HIDD), data collection guidelines, changes to NMAC policy, hospital training and evaluation, and data collection, analysis, and reporting.

Help Us Know Our Patients Better (PDF file, 95 KB; HTML)

A one-page flyer to educate patients about the importance of R/E/L data collection and to clarify the vocabulary for race, ethnicity, and tribal classification.

Standardizing the Collection of Race, Ethnicity and Tribal Affiliation Data (PDF file, 2.1 MB; HTML)

Hospital onsite training presentation for admissions and registration staff on reasons their organization is standardizing R/E/L data collection, how the data will be collected, and how to address patient questions about why this change is occurring.

Adapting a National Curriculum to Better Collect Race and Ethnicity Data in New Mexico Hospitals (PDF file, 264 KB; HTML)

A conference poster describing a process for improving training tools for hospital staff by incorporating health behavior theories to increase efficacy.

Pre-Intervention Survey of Hospital Staff (PDF file, 95 KB; HTML)

Self-administered survey tool asking hospital staff about their own R/E/L information and their knowledge of their organization’s efforts to collect R/E/L data.

Survey of Hospital Staff (PDF file, 42 KB; HTML)

Self-administered survey of hospital staff on what R/E/L data is currently collected, if there are guidelines for doing so, and what barriers to collection exist; and asks for other contacts at hospital that would be knowledgeable about the topics in the survey.

Survey on Race and Ethnicity Data Collection (PDF file, 83 KB; HTML)

Survey script for asking hospital managers for their own R/E/L information, what R/E/L data is currently collected, if there are guidelines for doing so, what barriers to collection exist, if there have been recent changes in administrative leadership, and if individual hospital report cards seem useful.

Recommended Staff Script for Collecting R/E and Tribal Affiliation Data (PDF file, 82 KB; HTML)

Script designed to help admissions and registration staff ask patients for their R/E/L information.

Immediate Post-Intervention Survey for Hospital Staff (PDF file, 80 KB; HTML)

Self-administered survey tool asking hospital staff about their own R/E/L information and their attitudes toward collecting R/E/L data at their hospital.

Post-Intervention Follow-up Survey for Hospital Staff (PDF file, 384 KB; HTML)

Self-administered survey tool asking hospital staff about their own R/E/L information, their knowledge of their organization’s efforts to collect R/E/L data, barriers to data collection, and their attitudes toward collecting R/E/L data at their hospital.

Patient Post-Hospitalization Telephone Survey (PDF file, 33 KB; HTML)

Survey document for calling people hospitalized in the past year to ask for their R/E/L information and evaluate their experiences related to R/E/L data collection during their hospital stay.

Sample Hospital Report Card (PDF file, 133 KB; HTML)

An example of a quarterly report that evaluates and tracks an individual facility’s progress in collecting race and ethnicity data and compares patient populations represented in statewide hospital data to the geographic area served.

Evaluating Progress Among Hospitals: Collecting Improved Race, Ethnicity, and Tribal Data in New Mexico (PDF file, 1.3 MB; HTML)

A presentation describing the NM Hospital Inpatient Discharge Database hospital reporting requirements, challenges, and results from 50 hospitals in the areas of timeliness, quality, and completeness.

GRANT SUMMARY: Using the most complete roster of Northwest American Indians/Alaska Natives (AI/AN) available, the Improving Data & Enhancing Access–Northwest (IDEA–NW) Project of the Northwest Portland Area Indian Health Board conducted record linkages with an array of health-related data systems in a three-state region to identify and correct racial misclassification. These activities directly benefited both state partners and tribes by improving the validity and reliability of race data in state data systems, and providing more accurate and complete assessment of health status data to Northwest tribal communities. Both outcomes inform ongoing efforts to eliminate health disparities experienced by AI/AN in the Northwest and serve as a model to further address health disparities of AI/AN at the national level.

Northwest Portland Area Indian Health Board/Northwest Tribal Epidemiology Center
Principal Investigator: Victoria Warren-Mears, PhD, RD, FANP
Co-investigator: Thomas Weiser, MD, MPH
Project Director: Sujata Joshi, MSPH
Biostatisticians:
Jenine Dankovchik, BS
Nancy Bennett
Kristyn Bigback, MPH

State Partners
Idaho Department of Health and Welfare
Idaho Hospital Association
Oregon Health Authority
Washington Department of Health

Record Linkage Concepts (PDF file, 678 KB; HTML)

A presentation on the theory behind deterministic and probabilistic matching, deduplication, and blocking and matching variables.

Process Diagram for Linking Data (PDF file, 180 KB; HTML)

A diagram showing the approach used by the project to link inpatient data from various sources with the Northwest Tribal Registry (NTR).

Overview of Link Plus (PDF file, 394 KB; HTML)

A detailed presentation on using the Link Plus probabilistic record linkage and de-duplication program.

Link Plus Self-Training Manual for Linkage (PDF file, 697 KB; HTML)

A user guide that explains how to use the Link Plus software by walking through an example of a record linkage between the NTR and a state health registry.

Link Plus Tip Sheet and Resources (PDF file, 142 KB; HTML)

A two-page tip sheet offering ways to make using Link Plus easier, with links to additional resources.

Northwest Tribal Registry Data Assessment (PDF file, 179 KB; HTML)

A summary of an assessment of the completeness and representativeness of the NTR and the population contained therein.

Motor Vehicle Crash Mortality among Northwest AI/AN (PDF file, 958 KB; HTML)

A presentation that summarizes the results of a data linkage project that showed a high prevalence of racial misclassification among all AI/AN and discusses how the findings contribute to injury prevention efforts.

METHODS REPORTS AND DATA RESOURCES: Linkage Summary Table

Table showing results from the IDEA-NW project’s data linkages in the areas of proportion of record matches and misclassifications of race.

Record Linkage to Enhance STD/HIV Surveillance Data for OR AI/AN Population (PDF file, 676 KB; HTML)

Poster presentation on the positive effect of correct classification of race on public health prevention and intervention efforts.

Racial Misclassification and Disparities in Mortality among AI/AN and Other Races, Washington (PDF file, 1.2 MB; HTML)

A presentation on the results of a linkage of WA death certificates with the NTR which determined that numerous AI/AN deaths were misclassified as deaths for other races.

Improving Data & Enhancing Access (IDEA-NW) Project (PDF file, 5.2 MB; HTML)

A presentation that describes the results of a record linkage project between NTR and various public health data sets to evaluate racial misclassification and improve disease/mortality estimates.

Pregnancy Risk Factors and Birth Outcomes within Oregon’s AI/AN Population, 2008-2010 (PDF file, 1.0 MB; HTML)

A presentation that describes the results of a project that linked birth certificate data with the NTR to examine the public health effects of racial misclassification.

Trends in Unintentional Injury Mortality among AI/AN, Washington, 1990-2009 (PDF file, 1.0 MB; HTML)

A presentation that describes a project to link data between Indian patient registration and various disease registries. The results allow more accurate ascertainment of cause of death for the population.

Life Expectancy of Oregon AI/AN (PDF file, 1.3 MB; HTML)

A presentation on the results of a project to link death certificate data with the NTR to examine the underestimation of mortality measures for AI/AN due to racial misclassification.