Patient Centered Demographic Data Collection. Kevin Larsen, MD, FACP Hennepin County Medical Center Center for Urban Health

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Patient Centered Demographic Data Collection Kevin Larsen, MD, FACP Hennepin County Medical Center Center for Urban Health

Why us? Diverse patient population Wide health disparities Influx of new immigrants and refugees Strong partnership with public health

Setting: Hennepin County Medical Center Publicly-owned, urban, safety net in downtown Minneapolis, MN Level one trauma center Hospital: 19,000 patients per year Clinics: 168,000 outpatients per year On-campus primary care (3 clinics) Community-based primary care (3 clinics) 20+ on-campus specialty clinics

Minnesota One of the healthiest states in the US, with good outcomes, low cost, long life 90 % of Minnesota is white Non-white Minnesotans have much worse outcomes, shorter life Therefore, some of the widest health disparities in the US HCMC sees many non-white patients

Health Disparities HIV Blacks substantially higher HIV rates (up to 5X) than whites in the US Minnesota is the same

Estimated Number of New AIDS Cases, by Year of Diagnosis Number of new cases per 100,000 90 75 Black 2010 target = 1.0 60 45 30 15 American Indian/Alaska Native Hispanic * White Asian/Pacific Islander 0 1998 1999 2000 2001 Year of diagnosis * Persons of Hispanic origin may be of any race. NOTE: Data are for persons ages 13 and over. Data are adjusted for reporting delays. SOURCE: HIV/AIDS Reporting System, CDC/NCHSTP.

Black doesn t describe our patients adequately Half of Minnesota immigrants are refugees Large influx of East African refugees in the mid 1990s after the war in Somali HCMC sees high volume of refugees HCMC sees over ½ of HIV/AIDS in Minnesota

Primary* Refugee Arrivals to MN by Region of World 1979-2006 8000 7000 Number of arrivals 6000 5000 4000 3000 2000 1000 0 1979 1980 1981 1982 1983 1984 1985 1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 Southeast Asia Sub-Saharan Africa Eastern Europe FSU Other Refugee Health Program, Minnesota Minnesota Department Department of Health of Health *First resettled in Minnesota

New HIV Infections* Among Females by Race/Ethnicity and Year of Diagnosis, 1990-2001 40 35 White African American Hispanic Asian American Indian African-born 30 Number of Cases 25 20 15 10 5 0 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 Year * HIV or AIDS at first diagnosis African-born refers to Blacks who reported an African country of birth; African American refers to all other Blacks. Cases with unknown race are excluded.

HIV/AIDS in Minnesota Stable number of new cases of HIV/AIDS African born persons < 1% of the State s population 21% of all HIV infections since 2002 Minnesota Health Department began to analyze African born and US born blacks separately in 2001 Data for Tb even more dramatic

Foreign-Born Tuberculosis Cases by Country of Birth - Minnesota 2001-2005 Other Countries (26%) Somalia (34%) India (5%) Liberia (5%) Mexico (6%) Vietnam (7%) Laos (7%) Ethiopia (10%)

HCMC Patient Population Multi-racial ~30% American-born Caucasian ~20% African-American ~12% 1 st or 2 nd generation African immigrant ~21% Hispanic (largely first generation) ~13% Asian, Native American, European immigrant Multi-ethnic African-American vs. African-born European-American vs. European-born Hmong vs. Vietnamese vs. Indian Mexican vs. Ecuadoran vs. Colombian

Photo: Ann O Fallon

Center for Urban Health Health services research arm of HCMC Studies: Quality of care Immigration Health disparities Issues of the urban poor Homelessness Access to care, food Insurance

Health Disparities framed as Quality Improvement HCMC along with Health Partners and the health department committed to decreasing health disparities Will do so with our typical quality improvement measures and tools Need to describe our patients to: Know that we are having an effect Appropriate resources

Immigrant Health: A Call to Action Recommendations from The Minnesota Commissioners Task Force on Immigrant Health

Recommendation #2 Collect information on race, ethnicity, and language preference of all patients, and on health care organizations ability to meet the needs of immigrant patients. Collecting data on race, ethnicity and language is legal and can help health care systems identify heath status disparities. Identifying inequalities in care can focus prevention and treatment efforts as well as the general expenditure of health dollars.

HCMC and Epic Epic project launched 3 years ago Epic fully deployed as of last month Gave us a chance to assess our data collection of demographics

HCMC s Demographics Process Partnered with stakeholders Patients Researchers Registration staff Planning office Quality office Interpreter services Health department National work (Romana Hasan-Wynia)

Clinical & Planning Staff Needs: Distinctions in data between: African-American vs. African-born If African-born, which culture? White Americans vs. new European immigrants Clinicians use distinctions to: Diagnose Be aware of potential culturally-specific health factors (e.g. diet, smoking, pregnancy, family support, treatment preferences) Planning & marketing use distinctions to: Identify communities served by HCMC Determine if HCMC is meeting community needs

Reporting & Research Needs: Common reporting format set at higher level Departments maintaining registries: Certification, accreditation and funding Core measure reporting Public health departments Epidemiology Comparison with community health surveys Clinical Researchers Identify prospective participants for clinical trials Examine aggregate data for trends

Office of Management & Budget (OMB) In U.S., OMB establishes reporting format OMB requires 2 questions: Hispanic ethnicity? Race? White African-American or Black Asian or Pacific Islander Native American or Alaskan Native Other

Who needs what? Interviewer/ Patient Pair Patient-perception Simple Short Clinicians Planning & Marketing Fine distinctions Registries * Clinical Researchers * Public Health Departments Fixed response choices OMB reporting format

Conflict area: Number of questions Downstream data users want extensive information Interviewer/Patient pair wants speed

Conflict area: Use of OMB Desired by registries, public health departments, clinical researchers, to meet requirements set by NIH, CDC, etc. Categories awkward for the interviewer/patient pair Distinctions not fine enough for: Clinicians Interpreter Services Planning & Marketing

Method of conflict resolution: If conflict is between downstream user and interviewer/patient pair, Resolve in favor of interviewer/patient pair Use of OMB classification scheme: CONDUCT EXPERIMENT!!!

Process Worked with community researchers from the health department Previously undertaken SHAPEcommunity based health survey which oversampled minorities and immigrants Gave us culturally specific information on what types of questions effective or noteffective

Piloted Scripted Registration Questions Asked at every registration Key measure was patient/interviewer comfort and completion Birthplace (e.g. country) Race Ethnicity Spoken language(s) Religion Marital status

Conclusions: OMB Classification OMB classification system imposes an identity that differs from the way patients perceive themselves. From patients, generates: Confusion (at best) Hostility (at worst) Service organization must be sensitive to those it serves. Cannot impose an identity. OMB scheme pits needs of service providers against needs of researchers. Foments: Inconsistent reporting from service organizations Wariness by service providers towards researchers

Health Partners Collaborating health organizationespecially around immigrant health Years ahead of us with Epic Recently committed to reporting typical quality improvement measures by race, ethnicity and country of origin

HealthPartners Cross Cultural Care "Cross cultural care is not just about 'other' cultures. It's about recognizing the effect of cultural values - which we all have - on health." - - Mary Brainerd, CEO HealthPartners is committed to transforming care for our members, our patients and our community through our Cross Cultural Care and Service initiative. This fact sheet outlines some of our key efforts and successes with this initiative: From the Health Partners website www.healthpartners.com

What is HealthPartners doing to provide equitable care? Gathering data (self-reported by patients) at the clinic and hospital level on race, country of origin and language preference. This data will be used to measure the quality of care delivered to different groups and to identify ways to ensure the delivery of equitable care. From the Health Partners website www.healthpartners.com

How will we use our data?

Catherine West, MS, RN, Quality Improvement Specialist June 15, 2007

Language Services Develop ongoing useful measures of effectiveness and create language services performance benchmarks Example measures The percent of patients who have been screened for their preferred spoken language The percent of LEP patients receiving initial assessment and discharge instructions from assessed and trained interpreters or from bilingual providers assessed for language proficiency

Epidemiology Foreign-Born Tuberculosis Cases by Country of Birth - Minnesota 2001-2005 Other Countries (26%) Somalia (34%) India (5%) Liberia (5%) Mexico (6%) Vietnam (7%) Laos (7%) Ethiopia (10%)

Malaria at HCMC Country of Origin SE Asia E Africa W Africa India U.S. other unknown 40 30 20 10 0 Year

Program planning :Acute Care HIV Testing Program 342 screened in one clinic in one year 49% African American 18% African immigrants (roughly proportional to demographics of walk in clinic attendees) 12 HIV positive (10 in African immigrants) rate ~ 3% overall (rate ~15% in African immigrants)

Analysis of Care Quality Pain Control in the ED Previous studies show less pain medicine given to minorities HCMC analysis shows only relationship is education attainment not: language race culture ethnicity

HEDIS, PQRI, Core Measures, etc Center for Urban Health plans to study adjusted performance measures Will adjust for: Insurance status Homelessness Chemical use Immigration status Interpreter use

Research Diabetes/metabolic syndrome development in Somali immigrants Smoking cessation in the homeless Medication errors in Spanish speaking patients Asthma care patient centered asthma action plans Pain control in the ED

Compliance?

Hospitals, Language, and Culture A Snapshot of the Nation Cross-sectional Qualitative study Three Research Questions: 1. What are the challenges hospitals face providing care to diverse patient populations? 2. What are hospitals doing to address these challenges? 3. Are there any promising practices that can be replicated to improve care? Copyright, The Joint Commission

Contact Information kevin.larsen@hcmed.org