Using Demographic Data to Provide PatientCentered Care: Why Data Collection is Important

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Using Demographic Data to Provide
Patient-Centered Care Why Data Collection is
Important

• Romana Hasnain-Wynia, PhD
• Health Research and Educational Trust/AHA
• November 3, 2006

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Focus on data is good only insofar that we
remember
It is not the data, it is what you do with it
-------Maryland Hospital Indicator Project
We can not manage what we can not measure.
---David Kindig, M.D., M.P.H., University of
Wisconsin School of Medicine
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Health Care Should Be

• Safe
• Effective
• Patient-Centered
• Timely
• Efficient
• Equitable

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Patient-Centered Care

• Incorporates respect for patients values,
  preferences, and expressed needs
• Is highly customized and incorporates cultural
  competence

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Equitable

• Providing care that does not vary in quality
  because of personal characteristics such as
  gender, ethnicity, geographic location and
  socio-economic status

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Disparities in Health Care

• STUDY CHARGE
•  
• Assess the extent of racial and ethnic
• differences in healthcare that are
• not otherwise attributable to known
• factors such as access to care
• Evaluate potential sources of racial
• and ethnic disparities in healthcare,
• provide recommendations regarding
• interventions to eliminate healthcare
  disparities.

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A National Problem

• African Americans are
• Less likely to have a kidney transplant, surgery
  for lung cancer, bypass surgery.
• More likely to have a foot amputation.
• More likely to die prematurely
• Latinos/Hispanics are
• Less likely to receive pain medications
• What about other groups? Chinese? Vietnamese
  Pakistanis? Nigerian? Somali? Haitian, etc.

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Evidence of Racial and Ethnic Disparities in
Healthcare

• Disparities consistently found across a wide
  range of disease areas and clinical services
• Disparities are found even when clinical factors,
  such as stage of disease presentation,
  co-morbidities, age, and severity of disease are
  taken into account

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..Continued

• Disparities are found across a range of clinical
  settings, including public and private hospitals,
  teaching and non-teaching hospitals, ambulatory
  care settings, etc
• Disparities in care are associated with higher
  mortality among minorities (e.g., Bach et al.,
  1999 Peterson et al., 1997 Bennett et al.,
  1995)

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Questions

• WHY and HOW disparities occur
• Which interventions are effective at reducing or
  eliminating disparities
• What proportion of observed disparities are
  amenable to improvements in health care
• HOW to collect relevant data

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CHANGING DEMOGRAPHICSCHANGING NEEDS
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Demographic Changes

• The U.S. population grew by 13 between 1990 and
  2000.
• (Andrulis et al. 2003)
• Foreign born population living in the US
  increased by 44
• to 28.4 million people during this period.
  (U.S. Census Bureau 2002).
• In 2000, the foreign born population comprised
  10 percent of
• the total population, its highest since 1930.
  (U.S. Census Bureau 2002)
• Over 300 different languages are spoken in the
  U.S. and nearly
• 52 million people (19 of the U.S. population)
  speak a language
• other than English at home. (U.S. Census
  Bureau 2005)

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Encounters with LEP Patients

• 80 of hospitals encounter patients with LEP
  frequently
• 43 daily, 20 weekly, 17 month

HRET, 2006
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Languages That 20 or More of Hospitals Encounter
Frequently
Spanish 93 Chinese 47 Vietnamese 39 Japanes
e 37 Korean 37 Russian 37 German 36 French
31 Arabic 26 Italian 26 Laotian 23 Hindi
22 Polish 22 Tagalog 21 Thai 20
Source HRET, 2006
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Race/Ethnicity Data

• Why Collect It
• Current Practices
• Barriers

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Why Collect Data?

• To monitor quality of care for all populations
• Target interventions appropriately to improve
  health care delivery

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Equity

• Domain of Equity is not top of mind for
  senior administrative and clinical leaders.
• Disparities is not our issue. They happen
  before and after the hospital.
• Great concern that addressing disparities somehow
  acknowledges discrimination or otherwise bad
  behavior.

Source 42 key informant interviews Bruce
Siegel, MD, MPH Planning Grant for Robert Wood
Johnson for Expecting Success, 2004
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EquityClinical Leadership

• N. Lurie, et al. Circulation (2005)
• 344 Cardiologists
• -34 agree disparities exist overall
• -12 believe disparities exist in own hospital
• -5 believe disparities exist in own practice
• S. Taylor, et al. Annals of Thoracic Surgery
  (2005)
• 208 Cardiovascular Surgeons
• -13 believe disparities occur often or very
  often
• -3 believe disparities occur often or very often
  in own practice

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Why Collect Data On Patient Race/Ethnicity
Internal Factors

• Valid and reliable data are fundamental building
  blocks for identifying differences in care and
  developing targeted interventions
• Being responsive to communities Pressing
  community health problems such as disparities in
  care can be addressed more effectively if health
  care organizations and health professionals build
  the trust of the community by documenting
  accomplishments
• Link race and ethnicity information to quality
  measures to examine disparities and undertake
  targeted interventions
• Ensure the adequacy of interpreter services,
  patient information materials, and cultural
  competency training for staff

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Why Collect Data continued

• External Factors
• Reporting to the Joint Commission on
  Accreditation of Healthcare Organizations
• Reporting to CMS (payer, purchaser regulator,
  insurer, works through QIOs)
• State mandates

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Current PracticesNational Survey of Hospitals
Who, When, and How The Current State of Race,
Ethnicity, and Primary Language Data Collection
in Hospitals, 2004 CMWF
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Nuts and Bolts of Data Collection

• Addressing Discomfort
• Categories
• Staff training
• Start the dialogue with the community before
  implementing systematic data collection on
  race/ethnicity/language

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Recommendations For Standardization

• Who provides the information
• When to collect
• Which racial and ethnic categories to use
• Where and how data are stored
• Address Patients Concerns
• Provide Staff training

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Common Barriers To Collecting Data

• Appropriate categories
• Patients perceptions/language and culture
• Staff discomfort in explicitly asking patients to
  provide this information.

• Validity and reliability of data
• Legal concerns
• System/organizational barriers

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A Project in Chicago
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Using Health Information Technology to Provide
Patient-Centered Care, Improve Quality and Reduce
Disparities

• Valid measures of hospital and physician clinical
  performance
• Coordination of care
• Exchange of information between
  providers/practitioners and patients
• Improve safety

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Project Adding Race/Ethnicity and other Patient
Demographic Information to Chicago Community
Health Center Clinical Performance Information
Systems The Partnership -Health Research and
Educational Trust -Alliance of Chicago Health
Services -American Medical Association Funded
by the Commonwealth Fund and the Robert Wood
Johnson Foundation
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American Medical Association

• Convened the Physician Consortium for
• Performance improvement, which aims to
• provide performance measurement
• resources to facilitate clinical quality
• improvement programs. The Consortium
• developed the Physician Performance
• Measurement Sets
• Diabetes, Asthma, Coronary Artery Disease, Heart
  Failure, Hypertension, Prenatal Care, Prevention
  and Immunizations

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Alliance of Chicago Health Services

• A group of community health centers with 24
  clinical sites throughout Chicago serving 65,000
  clients in 305,000 encounters annually. The
  Alliance was chosen by the Bureau of Primary
  Health Care to implement EHRs. The Alliance is
  integrating the Performance Measures into the
  EHRs and creating a data warehouse through
  funding from AHRQ.

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ADVANCE
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The project covers three critical areas in
improving health care delivery Adoption of
health information technology (Electronic Health
Record Systems) as a tool to monitor and improve
quality of care. Patient Centered Care (such as
respect for patient values, preferences and
needs, information/education, emotional support
and involvement of family to remove fear and
anxiety). Improving the quality of care for
vulnerable populations through targeted
interventions.
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What Do We Mean by Linking Demographic Data to
Clinical Data?

• Clinical Performance Measures will be linked with
• demographic data in the EHRs
• Will utilize the extract, transfer, and load
  software developed by General Electric.
  (Extraction will occur on a nightly basis.)
• The data will be loaded in a clinical data
  warehouse, which will be used to generate the
  clinical performance measure reports.
• The reporting process will include the transfer,
  linking, and aggregation of the patient
  demographic data with clinical data.

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Goals

• Standardize a process for collecting patient
  demographic data on patient race, ethnicity,
  language, health literacy (education),
  acculturation (years lived in the US), and
  socioeconomic status (family size, insurance,
  income).
• Link patient demographic data with national
  clinical performance measures in an electronic
  health record system.
• Show health care processes and outcomes for
  specific conditions stratified by key patient
  demographic information (to identify targeted
  opportunities for QI).

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Adult Diabetes Performance Measures-Current
System Captures the following
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Adult Diabetes Performance Measures-New System
Would Capture the following
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Contributions

• IOM report, Crossing the Quality Chasm, calls for
  national consensus on comprehensive standards
  for the definition, collection, coding, and
  exchange of clinical data.
• IOM report, Unequal Treatment, calls for the
  collection and reporting of data on health care
  access and utilization by patients race,
  ethnicity, socioeconomic status, and where
  possible, primary language
•  

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Benefits

• Standardize patient demographic data collection.
• Collect clinical performance measures.
• Link patient demographic data to clinical
  performance measures in an electronic health
  record system at clinical sites.
• This work speaks to the growing consensus that
  clinical quality improvement efforts should
  include key patient demographic data that allow
  for more targeted and efficient quality
  improvement interventions within health care
  organizations. In addition, this work will assess
  the feasibility of using electronic health record
  systems as a tool in quality improvement efforts
  in community health centers.