Collection of Race, Ethnicity, and Language Data at Henry Ford Health System David R. Nerenz, Ph.D. Director, Center for Health Policy and Health Services Research
National Initiatives Healthy People 2010 provided a roadmap for improving the health of all people in communities across the nation. The two HP goals are: 1) Increase the quality and year of healthy life 2) Eliminate health disparities National Healthcare Disparities Report National Healthcare Quality Report Meaningful Use requirements for EHR systems
Why Should HFHS Collect Patient Race/Ethnicity, and Primary Language Data 1. Deliver and monitor quality of care rendered 2. Know our patients to meet unique needs and show communities that we deliver the best care possible 3. Design innovative programs to eliminate disparities and rigorously test them 4. Satisfy legal, regulatory and accreditation requirements (i.e.: JCAHO, CMS, etc.) 5. Take a leadership position and model best an evolving best practice
To Improve Quality of Care We Need To Collect Data Quality of care can be hindered because of limited or incomplete communication, language differences, or cultural barriers The delivery of quality care could be enhanced if mechanism to collect accurate data exist to address these challenges Unable to accurately assess health outcomes for different groups
REL Data Collection at HFHS Prior to Current Initiative All analyses were based on racial/ethnic data available in Corporate Data Store Inconsistent process for soliciting race/ethnic information Categories were limited Classification often based on registration clerk perception, resulting in some misclassification Unable to select multiple racial or ethnic categories
Exercise in identification of race and ethnicity at HFHS Original Data Downloaded by Electronic Medical Records Chart review/patient report n % n % % difference Hispanic 23 1.5 78 5.0% +3.5% Afr. American/Black 667 42.6 708 45.3% + 2.7% White 722 46.2 684 43.7% - 2.5% Arab American 13 0.8 61 3.9% + 3.1% Asian 10 0.6 30 1.9% +1.3% Unknown 129 8.2 3 0.2% - 8.0% *n=1564
Advising the Nation. Improving Health. Subcommittee on Standardized Collection of Race/Ethnicity Data for Healthcare Quality Improvement September 15, 2009
Subcommittee Charge Report on the issue of standardization of race, ethnicity, and language variables Define a standard set of race, ethnicity, and language categories, and methods of obtaining these data
IOM Report, 2003: Unequal Treatment Disparities in the health care delivered to racial and ethnic minorities are real and are associated with worse outcomes in many cases, which is unacceptable. - Alan Nelson, retired physician, former president of the American Medical Association
Recommended variables for standardized collection of race, ethnicity, and language need Race and Ethnicity OMB Hispanic Ethnicity Hispanic or Latino Not Hispanic or Latino OMB Race (Select one or more) Black or African American White Asian American Indian or Alaska Native Native Hawaiian or Other Pacific Islander Some other race Granular Ethnicity Locally relevant choices from a national standard list of approximately 540 categories with CDC/HL7 codes Other, please specify: response option Rollup to the OMB categories Spoken English Language Proficiency Spoken Language Preferred for Health Care Language Need Very well Well Not well Not at all (Limited English proficiency is defined as less than very well ) Locally relevant choices from a national standard list of approximately 600 categories with coding to be determined Other, please specify: response option Inclusion of sign language in spoken language needs list and Braille when written language is elicited
Recommendation: Granular Ethnicity Collect granular ethnicity data as a separate variable from the OMB race and Hispanic ethnicity categories Granular ethnicity categories should be selected from a national standard list Lists should include an Other, please specify: option for additional selfidentification
Selecting Locally Relevant Granular Ethnicity Categories Local circumstances can dictate whether an entity uses 10 or 100 categories from the national standard list; criteria for selection: Health and health care quality issues Evidence or likelihood of disparities Size of subgroups within the population Analyses of relevant data on the service or study population
Rationale for Language Need Data Persons with limited English proficiency are at risk for: Decreased access to care and having a usual source of care Adverse outcomes from medical errors and drug complications Less utilization of preventive care services
Time Line for REL Initiative IOM Report on Standardization of REL data collection September, 2009 Patient focus groups March, 2010 HFHS work group Summer, 2010 Pilot testing and staff training Spring, 2011 Roll-out in some clinics Summer, 2011 Full roll-out December, 2011
General Approach Two methods Call Center staff or Registration Clerk Phone or in-person questions Form for patient or family member to fill out For new patients, at time of registration For established patients, at time of clinic visit or other encounter Multiple fields in registration module feed other data systems (e.g., medical records)
Registration and Waiting Room Signage
Henry Ford Health System Patient Demographic Form Patient name MRN Date These next questions are about your race, ethnicity, and primary language. Hospitals are being required to ask these questions to meet certain regulatory standards. We are committed to ensuring all patients receive the best possible care. Completion of this form is voluntary. 1. Are you of Hispanic or Latino origin? Yes No Decline Do not know 2. Are you of Arab or Chaldean origin? Yes No Decline Do not know 3. Which of the following best describes your race? If necessary, you may select up to two. Asian Black American Indian/Alaska Native Native Hawaiian/Pacific Islander White Decline Do not know Other 4. Please provide one or two nationalities or ethnic groups that best describe your ancestry. (For example, Italian, Jamaican, African American, Haitian, Korean, Lebanese, etc.) Groups noted below are among the most frequently selected according to our current data. This list will be updated periodically. If your nationality/ethnicity is not listed, please mark "Other" and write in your preference. African American Greek Palestinian Albanian Hungarian Polish Armenian Indian (East Asian) Puerto Rican Belgian Iraqi Romanian Bangladeshi Iranian Russian Chaldean Irish Scottish Chinese Italian Spanish (Spain) Chippewa/Ojibwe Jamaican Swedish Cuban Japanese Syrian Czech/Slovakian Jewish Yemeni Dutch Jordanian Vietnamese Egyptian Korean Ukrainian English Lebanese Filipino Macedonian Other (specify) Finnish Maltese French Mexican German Nigerian Do not know 5. How would you rate your ability to speak English? Very well Not well Decline Well Not at all Do not know 6. What language do you feel most comfortable using when discussing your health care? Sign Language (American) Cantonese Russian Decline Albanian English Spanish Do not know Arabic Italian Vietnamese Other (specify ) Bengali Mandarin Yemen Arabic Thank you. Please return this form to a front desk staff member.
Current Status Some challenges in initial roll-out period Competing tasks for clinic staff Patient questions or concerns Process going relatively smoothly now Approximately 15-25,000 new forms completed each month. Part of regular registration process, not a special project
Conclusions Data on REL a necessary condition for quality improvement and disparity reduction Recommendations of 2009 IOM committee can be implemented in regular clinic operations Useful to allow for multiple methods of data collection Good levels of staff and patient acceptance after initial adjustment period