Health Disparities: Visions of a New Approach to Health Care Frank McClellan Beck Chair Professor of Law, Co-Director Center of Health Law, Policy and

Health Disparities: Visions of a New Approach to Health Care

Frank McClellanBeck Chair Professor of Law,

Co-DirectorCenter of Health Law, Policy and Practice

Beasley School of Law at Temple University

Seeing Patients: Unconscious Bias in Health Care

The Story of Mr. Jackson

• History of Heart Disease

• Diabetes

• High Blood pressure

• Heart Attack

• Emergency Room Visit

• Dies 6 hours later in treatment room

• Never seen by cardiologist at hospital

Life Expectancy by Race and Gender

77.980.4 78.1

69.275.6

83.1

76.280.6

72.9

0

10

20

30

40

50

60

70

80

90

Black White Hispanic

Race

Ye

ars

Male

Female

Total

Source: CDC Vital and Health Statistics Report October 2010, United States Life Tables by Hispanic Origin, http://www.cdc.gov/nchs/data/series/sr_02/sr02_152.pdf - study from 2006

Work Life Expectancy by Age, Gender and Race ALL MEN ALL WOMEN

AGE 1979-80 1992-93 1997-98 1979-80 1992-93 1997-98

20 36.8 36.0 36.9 27.2 30.0 31.6

25 33.1 32.6 33.4 24.0 26.7 28.3

30 28.9 28.5 29.3 20.8 23.2 24.6

35 24.5 24.2 24.9 17.6 19.7 20.9

40 20.0 19.8 20.6 14.3 16.1 17.1

African-American Men Nonwhite Men White Men

Age 1992-93 1997-98 1992-93 1997-98 1992-93 1997-98

20 29.4 29.4 30.6 32.2 37.0 37.7

25 26.8 26.5 27.9 29.4 33.4 34.1

30 23.4 22.9 24.5 25.7 29.2 29.8

35 19.8 19.1 20.7 21.8 24.7 25.4

40 15.9 15.4 16.7 17.9 20.3 21.0

Nonwhite includes African-American and Hispanic origin, Asians & Pacific Islanders, American Indians, and Alaskan natives

Source: Work Life Estimates at Millennium's End: Changes over the Last Eighteen Years By: James Ciecka, Thomas Donley, and Jerry Goldman; Based on Data from the US Bureau of Labor Statistics (1986) and Ciecka, Donley, and Goldman (1995 and 1999); http://lmi.ides.state.il.us/lmr/worklife.htm

6.95.8 5.7

13.6 13.3

8.1

4.95.6 5.5

8.3

4.4 4.7

6.4

0

5

10

15

All Rac

es

White

Non-

Hispan

ic

White

Africa

n Am

erican

Non-

Hispan

ic

Africa

n Am

erican

Amer

ican In

dian/A

laska

Nativ

e

Asian/

Pacific

Islan

der

Hispan

ic

Mexic

an

Puerto

Rica

n

Cuban

Centra

l & S

outh

Am

erican

Other &

Unk

nown

Hispan

ic/La

tino

Infa

nt

Mo

rtal

ity

Rat

e p

er 1

,000

Liv

e B

irth

s

Source: CDC, NCHS, Health, United States, 2008, Table 18 http://www.cdc.gov/nchs/data/hus/hus08.pdf

50.3 50.742.4

99.1

23.5

0

20

40

60

80

100

All Races Non-HispanicWhite

White AfricanAmerican

HispanicAg

e-A

dju

ste

d D

ea

th R

ate

pe

r 1

00

,00

0 L

ive

B

irth

s

Source: National Vital Statistics Report, 56(16), 6/11/08: Deaths: Preliminary Data for 2006, Table 8, p32 http://www.cdc.gov/nchs/data/nvsr/nvsr56/nvsr56_16.pdf

12.49.6 9.1

31.7

8.2

0

5

10

15

20

25

30

35

All Races Non-HispanicWhite

White AfricanAmerican

Hispanic

Ag

e-A

dju

sted

Mat

ern

al M

ort

alit

y R

ate

per

100

,000

Per

son

s

Source: CDC, NCHS, Health, United States, 2008, Table 42.http://www.cdc.gov/nchs/data/hus/hus08.pdf

Health Care Divided: Race and Healing a Nation

EMERGENCY ROOM VISITS and ACUTE CARE BASED ON

RACIAL DISPARITIES

Percentage of persons by race with at least one emergency department

visit in a 12 month period (2007)

17.9%20.1%

25.2%

0

10

20

30

40

50

Pe

rce

nta

ge

Hispanic White Black

Race

Source: National Center for Health Statistics, Data Brief, May 2010 – Emergency Department Visitors and Visits: Who Used the Emergency Room in 2007? Tamyra Garcia, Amy Bernstein, and Mary Ann Bush

Acute Care Visits to Various Providers

Percentage Out of 354 Million Average Annual Visits Between 2001-2004

7%

28%

20%

42%

Patients' PersonalPhyscians

EmergencyDepartments

Specialists

OutpatientDepartments

Source: Where Americans Get Acute Care? Increasingly, It’s Not at Their Doctor’s Office by Stephen R. Pitts, Emily R. Carrier, Eugene C. Rich, Arthur L. Kellerman

Average Annual Frequency of Acute Care Visits from 2001-2004

97.9

77

36.2

45.7

71.8

25.1

0 20 40 60 80 100

EmergencyDepartment

GeneralFamily/Practice

General InternalMedicine

General Pediatrics

All Other Specialties

Hospital OutpatientDepartment

Se

ttin

g

Millions


Average Annual Ambulatory Visits by Setting

Type of Visit Millions of Visits Annually 2001-2004

Routine Follow-up visits/non-illness visits

0.0

Follow-up acute visits/postoperative visits

6.2

Acute care visits 97.9

Total 104.1


Emergency Department Visits Within 12 Months Among Adults 18 Years and Older

by Race/Ethnicity Percent of adults with one or more emergency department visits

Race/Ethnicity

Year

1997 2000 2006 2007

White 19 19.4 20.1 19.6

Black or African American 25.9 26.5 25.6 26.3

Hispanic or Latino 19.2 18.3 17.3 18.2

American Indian/Alaska Native 24.8 30.3 21.1 26.7

Asian 11.6 13.6 13.6 11.9

Source: CDC and the National Center for Health Statistics - Health, United States, 2009 Report, Table 89, available at http://www.cdc.gov/nchs/data/hus/hus09.pdf#089

PA, MD and IL Hospital Emergency Room Visits Per 1,000 Population

2005-2008

380

400

420

440

460

480

Year

Vis

its

pe

r 1

,00

0 P

op

ula

tio

n

PennsylvaniaMarylandIllinois

Pennsylvania 434 450 464 478

Maryland 386 410 407 403

Illinois 393 398 394 399

2005 2006 2007 2008

Source: The Kaiser Family Foundation, statehealthfacts.org, Hospital Emergency Room Visits Per 1,000 Population 2005-2008, available at http://www.statehealthfacts.org/comparemaptable.jsp?yr=63&typ=1&ind=388&cat=8&sub=94

Freedom Riders: 1961 and the Struggle for Racial Justice

Gospel Choirs: Psalms of Survival in an Alien Land Called Home

Long Walk to Freedom: The Autobiography of Nelson Mandela

Unnatural Causes

• Is inequality making us sick?

• A four hour documentary exploring racial and socioeconomic inequities in health

• California Newsreel

• www.unnaturalcauses.org

http://www.unnaturalcauses.org/video_clips_detail.php?res_id=80

Unnatural Causes: Video Trailer

Health DisparitiesHealth DisparitiesCommunities of ColorCommunities of Color

are Disproportionately Affectedare Disproportionately Affected

What is a “Health Disparity?”What is a “Health Disparity?”Conceptual IssuesConceptual Issues

• InequalityInequality

• Difference in condition, rankDifference in condition, rank

• Lack of equality as of opportunity, Lack of equality as of opportunity, treatment, or statustreatment, or status

• Inequity Inequity – Unfair and unjustUnfair and unjust– Unnecessary and avoidableUnnecessary and avoidable

““Health Disparity” in Public Health Disparity” in Public Health – Operational DefinitionHealth – Operational Definition

• Quantitative measures: rates, percents, Quantitative measures: rates, percents, means…means…

• The Quantity that separates a group from The Quantity that separates a group from a reference point on a particular measure a reference point on a particular measure of healthof health

• Calls attention to differences in health Calls attention to differences in health between groups between groups regardless of causeregardless of cause

• Can be measured in absolute or relative Can be measured in absolute or relative termsterms

Populationof the United States by Race & Hispanic Origin:

2008 & Projected 2050

46

15

1.6 25.19.2

15

30

66

14

0

10

20

30

40

50

60

70

80

90

100

2008 2050

% P

erce

nt o

f Tot

al U

.S. P

opul

atio

n Non-Hispanic White

African American

American Indian / Alaska Native

Asian

Hispanic/Latino

Source: U.S. Census Bureau, 2008 National Population Projections, August 14, 2008http://www.census.gov/Press-Release/www/releases/archives/population/012496.html

Racial and Ethnic Minority Racial and Ethnic Minority PopulationsPopulations

• American Indian/Alaska Native (AI/AN)American Indian/Alaska Native (AI/AN)

• Asian AmericanAsian American

• Black or African AmericanBlack or African American

• Hispanic or LatinoHispanic or Latino

• Native Hawaiian or Other Pacific Islander Native Hawaiian or Other Pacific Islander (NHOPI)(NHOPI)

Other Populations By . . .Other Populations By . . .

• Socio-economic status Socio-economic status

• Geography (urban or rural)Geography (urban or rural)

• GenderGender

• AgeAge

• Disability statusDisability status

• Risk status related to sex and genderRisk status related to sex and gender

798.8 785.3

1016.5

663.4

440.2

590.7

0

200

400

600

800

1000

1200

All Races White AfricanAmerican

AmericanIndian/Alaska

Native

Asian/PacificIslander

Hispanic

Ag

e-A

dju

sted

Dea

th R

ate

per

100

,000

Per

son

s

211.1 207.8

271.3

141.8

113.3

157.3

183.8 182.6

222.7

123.2110.5

122.8

46.6 44.7

65.2

34.8 38.6 35.7

0

50

100

150

200

250

300


AmericanIndian/ Alaska

Native

Asian/ PacificIslander

Hispanic

Age-

Adju

sted

Dea

th R

ate

per

100

,000

Per

sons

Heart DiseaseCancerStroke

24.622.5

46.9

41.5

16.6

33.6

0

5

10

15

20

25

30

35

40

45

50



Native


Hispanic

Ag

e-A

dju

sted

Dea

th R

ate

per

100

,000

Per

son

s

15.2 15.614.5

24.8

7.6

14.7

0

5

10

15

20

25



Native


Hispanic

Ag

e-A

dju

sted

Dea

th R

ate

per

100

,000

Per

son

s

4.2

2.2

19.4

2.7

0.6

4.7

0

5

10

15

20



Native


Hispanic

Ag

e-A

dju

sted

Dea

th R

ate

per

100

,000

Per

son

s

9.0 9.27.7

22.6

3.6

13.9

0

5

10

15

20

25



Native


Hispanic

Ag

e-A

dju

sted

Dea

th R

ate

per

100

,000

Per

son

s

0.8 1.1

9.3

6.0

25.8

8.4

23.4

0

5

10

15

20

25

30

Multi Racial non-HispanicWhite

non-HispanicBlack

American Indian/ Alaska Native

(AI/ AN)

Asian American Hispanic/ Latino Native Hawaiian& Other Pacific

Islanders(NHOPI)

Age

-Adj

uste

d Cas

es p

er 100

,000

Per

sons

Source: CDC, MMWR, March 21, 2008 / 57(11);281-285, Trends in TB, US, 2007, Table:

http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5711a2.htm

1.1

2.3

1.21.1

0

1

2

3

White non-Hispanic Black non-Hispanic Asian/Pacific Islander Hispanic/Latino

Age

-Adj

uste

d C

ases

per

100

,000

Per

sons

Source: CDC MMWR, V57, SS2, March 21, 2008, p5. http://www.cdc.gov/mmwr/PDF/ss/ss5702.pdf

211.1 207.8

271.3

141.8

113.3

157.3

0

50

100

150

200

250

300



Native


Hispanic

Ag

e-A

dju

sted

Dea

th R

ate

per

100

,000

Per

son

s

183.8 182.6

222.7

123.2110.5

122.8

0

50

100

150

200

250



Native


Hispanic

Ag

e-A

dju

sted

Dea

th R

ate

per

100

,000

Per

son

s

46.6 44.7

65.2

34.838.6

35.7

0

10

20

30

40

50

60

70



Native


Hispanic

Ag

e-A

dju

sted

Dea

th R

ate

per

100

,000

Per

son

s

24.522.6

53.3

17.6

10.4

18.5

0

5

10

15

20

25

30

35

40

45

50

55

60



Native


Hispanic

Ag

e-A

dju

sted

Dea

th R

ate

per

100

,000

Per

son

s

52.6 53.1

58.4

34.1

25.722.4

0

5

10

15

20

25

30

35

40

45

50

55

60



Native


Hispanic

Ag

e-A

dju

sted

Dea

th R

ate

per

100

,000

Per

son

s

43.245.4

30.629.1

14.9

19.3

0

5

10

15

20

25

30

35

40

45

50



Native


Hispanic

Ag

e-A

dju

sted

Dea

th R

ate

per

100

,000

Per

son

s

24.1 23.4

32.8

15.2

12.2

15.0

0

5

10

15

20

25

30

35



Native


Hispanic

Ag

e-A

dju

sted

Dea

th R

ate

per

100

,000

Per

son

s

17.5 16.9

24.8

12.011.2

12.4

0

5

10

15

20

25



Native


Hispanic

Ag

e-A

dju

sted

Dea

th R

ate

per

100

,000

Per

son

s

20.3 20.221.7

20.4

15.516.8

0

5

10

15

20

25



Native


Hispanic

Ag

e-A

dju

sted

Dea

th R

ate

per

100

,000

Per

son

s

Landmark: The Inside Story of America’s New Health Care Law and What it Means for Us All

Patient Protection and Affordable Care Act of 2010 (PPACA): Advancing Health Equity for

Racially and Ethnically Diverse Populations

http://www.jointcenter.org/hpi/sites/all/files/PatientProtection_PREP_0.pdf

The Lost Art of Healing: Practicing Compassion in Medicine

Preventive Services Under the PPACA

• SEC. 1001 - Providing Free Preventive Care. All new plans must cover certain preventive services such as mammograms and colonoscopies without charging a deductible, co-pay or coinsurance. Effective for health plan years beginning on or after September 23, 2010.

• SEC. 4002 - Preventing Disease and Illness. A new $15 billion Prevention and Public Health Fund will invest in proven prevention and public health programs that can help keep Americans healthy – from smoking cessation to combating obesity. Funding begins in 2010.

• SEC. 4103 - The law provides certain free preventive services, such as annual wellness visits and personalized prevention plans for seniors on Medicare. Effective January 1, 2011.

• SEC. 4106 - Improving Preventive Health Coverage. To expand the number of Americans receiving preventive care, the law provides new funding to state Medicaid programs that choose to cover preventive services for patients at little or no cost. Effective January 1, 2013.

Source: Healthcare.gov, http://www.healthcare.gov/law/about/order/byyear.html

Interim Final Regulations (IFR) and

Preventive Care • Section 1001 of the Affordable Care Act amending section 2713

of the PHS Act, along with a set of interim final regulations (issued by the Internal Revenue Service, DHHS, and the Department of Labor on July 19, 2010 to implement provisions of health care reform) require that a group health plan and a health insurance issuer offering group or individual health insurance coverage provide coverage for the recommended preventive services without cost-sharing requirements for:

1. Evidence-based items or services that have in effect a rating of A or B in the current recommendations of the United States Preventive Services Task Force (Task Force) with respect to the individual involved.

2. Immunizations for routine use in children, adolescents, and adults that have in effect a recommendation from the Advisory Committee on Immunization Practices of the Centers for Disease Control and Prevention (Advisory Committee) with respect to the individual involved.

IFR and Preventive Care Continued…

3. With respect to infants, children, and adolescents, evidence-informed preventive care and screenings provided for in the comprehensive guidelines supported by the Health Resources and Services Administration (HRSA).

4. With respect to women, evidence-informed preventive care and screening provided for in comprehensive guidelines supported by HRSA (not otherwise addressed by the recommendations of the Task Force). The Department of HHS is developing these guidelines and expects to issue them no later than August 1, 2011.

Examples of Grade A and B Recommendations of the United States Preventive Services Task Force

Topic Text Grade

Screening and counseling to reduce alcohol misuse

The U.S. Preventive Services Task Force (USPSTF) recommends screening and behavioral counseling interventions to reduce alcohol misuse (go to Clinical Considerations) by adults, including pregnant

women, in primary care settings.

B

Screening for high blood pressure The U.S. Preventive Services Task Force (USPSTF) recommends screening for high blood pressure in adults aged 18 and older.

A

Screening for breast cancer (mammography)

The USPSTF recommends screening mammography for women with or without clinical breast examination (CBE), every 1-2 years for

women aged 40 and older.

B

Screening for cholesterol abnormalities: men 35 and older

The U.S. Preventive Services Task Force (USPSTF) strongly recommends screening men aged 35 and older for lipid disorders.

A

Screening for cholesterol abnormalities: men younger 35 a

The USPSTF recommends screening men aged 20 to 35 for lipid disorders if they are at increased risk for coronary heart disease.

B

Source: Healthcare.gov, www.healthcare.gov/center/regulations/prevention/regs.html

Consumer Assistance Programs under the PPACA

• Section 1002 - States that apply can receive federal grants to help set up or expand independent offices to help consumers navigate the private health insurance system.

• These programs will also collect data on the types of problems consumers have, and file reports with the U.S. Department of Health and Human Services to identify trouble spots that need further oversight.

• Goal is to help consumers:

– file complaints and appeals; – enroll in health coverage; – get educated about their rights and responsibilities in group

health plans or individual health insurance policies.

Source: Healthcare.gov, http://www.healthcare.gov/law/about/order/byyear.html

At Hospitals, New Methods with a Focus on Diversity

• Going beyond hiring interpreters and offering translated paperwork to improve care

• Example; nurse tells Latino patients at diabetes nutrition classes to avoid white bread, but does not mention tortillas, a staple of their diet

• Blood sugars levels remained high until she asked them to bring in samples of food they ate at home

• Source: N.Y. Times, 9-6-10

Provisions of the Patient Protection and Affordable Care Act Expanding Community

Health Centers• SEC. 10503 – Community Health Centers and

the National Health Service Corps Fund; “to provide for expanded and sustained national investment in community health centers” – appropriates new funding between fiscal years 2011-2015 $7 billion for services (to be increased to $11 billion

under the President’s new proposal) $1.5 billion for the construction and renovation of

CHCs$1.5 billion for the National Health Service Corps

(which will place approximately 15,000 primary care providers in provider-short communities)

Source: Text of H.R. 3590: Patient Protection and Affordable Care Act, available at http://www.govtrack.us/congress/billtext.xpd?bill=h111-3590

Provisions of the Patient Protection and Affordable Care Act Expanding Community

Health Centers Continued…• SEC. 5508- Increasing Teaching Capacity; authorizes a new

Title VII grant program for the development of residency programs at health centers and creates a new Title III program that provides payments to community-based entities that operate teaching programs, appropriate $125 million from 2010-2012 to carry this out

• SEC. 5601 – Spending for Federally Qualified Health Centers $2.9 billion 2009-2010 $3.9 billion 2010-2011 $4.9 billion 2011-2012 $6.4 billion 2012-2013 $7.3 billion 2013-2014 $8.3 billion 2014-2015

Source: Text of H.R. 3590: Patient Protection and Affordable Care Act, available at http://www.govtrack.us/congress/billtext.xpd?bill=h111-3590

KEY PROVISIONS OF THE PATIENT PROTECTION AND AFFORDABLE CARE ACT

CONTINUED…

• SEC. 3501. HEALTH CARE DELIVERY SYSTEM RESEARCH: establishing the functions of the Center for Quality Improvement and Patient Safety of the Agency for Healthcare Research and Quality, among them is to make the research findings of the Center available to the public through multiple media and appropriate formats to reflect the varying needs of health care providers and consumers and diverse levels of health literacy

KEY PROVISIONS OF THE PATIENT PROTECTION

AND AFFORDABLE CARE ACT (H.R. 3590) • SEC. 5002. DEFINTIONS: Health Literacy (the degree to

which an individual has the capacity to obtain, communicate, process, and understand health information and services in order to make appropriate health decisions)

• SEC. 5307. CULTURAL COMPETENCY, PREVENTION, AND PUBLIC HEALTH AND INDIVIDUALS WITH DISABILITIES TRAINING: emphasizing collaboration between several groups (e.g. community-based organizations, licensing and accreditation schools, health professional societies) to adopt culturally competent measures

• SEC. 5301. TRAINING IN FAMILY MEDICINE, GENERAL INTERNAL MEDICINE, GENERAL PEDIATRICS, AND PHYSICIAN ASSISTANTSHIP: preference and priority in awarding grants or contracts to qualified applicant accredited schools of medicine will go to those who provide training in culturally competency and health literacy (as one of other considerations)

Cultural Competency Statutes

• California

• New Jersey

• Massachusetts

CULTURAL COMPETENCEY ACCREDITATION STANDARDS

• Medical Schools

• Nursing Schools

• Continuing Medical Education

• Continuing Nursing Education

Human Experimentation

• Tuskegee Syphilis Study

• Jewish Chronic Hospital Case

• Johns Hopkins Lead Study case: Grimes v. Kenney Kreiger Institute, Inc. 782 A. 2d 807 (Md. 2001)(court holds researchers have special duty to children and parents cannot consent to non-therapeutic research that poses a risk of harm to their children

PROBLEM FOR GROUP DISCUSSION

• 70 year old African American Male refuses to see orthopedic surgeon, stating: “I do not trust white doctors and I believe that whatever happens now is God’s will. I have led a good life.”

Summary of Statutes and Accreditation Standards

• Informative source: https://www.thinkculturalhealth.hhs.gov/

LIAISON COMMITTEE ON MEDICAL EDUCATION

• STANDARDS for Accreditation of Medical Education Programs Leading to the M.D. Degree

• ED-21 “must demonstrate an understanding of the manner in which people of diverse cultures and belief systems perceive health and illness and respond to various symptoms, diseases and treatments.”

• ED 22 “must learn to recognize and appropriated address gender and cultural biases in themselves, in others, and in the process of health care delivery”

• http://www.lcme.org/functions2010jun.pdf (last visited Aug. 27, 2010).

Poor health literacy is a “stronger predictor of a person’s health than age, income, employment status, education level, and race.”

-Report on the Council of Scientific Affairs, Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association, JAMA, Feb 10, 1999).

The Importance of Poor Health Literacy

Health Literacy: A Prescription to End Confusion

EXTENT OF LOW HEALTH LITERACY• 90 million U.S. adults have low health literacy (nearly half

of all U.S. adults)• The average annual health care costs of persons with very

low literacy (described as reading at the grade two level or below) may be four times greater than for the general population

• 75% of U.S. persons with chronic physical or mental health issues are in the limited literacy category

• One study of Medicare enrollees found that 34 percent of English speakers and 54 percent of Spanish speakers had inadequate or marginal health literacy

• A study of patients 60 years and older at a public hospital found that 81 percent could not read and understand basic materials such as prescription labels and appointments

Note: Healthy People 2010 defines Health Literacy as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions”Sources: Healthy People 2010 (Chapter 11), Health Communication, U.S. Department of Health and Human Services; National Network of Libraries of Medicine, Health Literacy http://nnlm.gov/outreach/consumer/hlthlit.html

PAYING FOR THE COST OF LOW HEALTH LITERACY (1998 STUDY)

Low Health Literacy Leads to $73 Billion in Health Care Expenditures by Various Payees

$12.1$11.5

$10.3

$7.6$3.4

$28.3

Medicare

Employers

Patients

Medicaid

Other Public

Other Private

Source: National Academy on an Aging Society, Health Literacy Fact Sheet: Low Health Literacy Skills Increase Annual Health Care Expenditures by $73 Billion http://www.agingsociety.org/agingsociety/publications/fact/fact_low.html

Dollars in Billions

THE 2003 NATIONAL ASSESMENT OF ADULT LITERACY (NAAL) SURVEY

• First large-scale national literacy study to have a component specifically designed to measure health literacy in adults and provide a separate health literacy score

• Conducted with a nationally representative sample of 19,000 adults aged between 16 years and older

• Adult performance measured on a range of health-related tasks (e.g. understanding dosing instructions for medication)

• The NAAL definition of functional health literacy: the ability of U.S. adults to use printed and written health related information in English to function in society, achieve one’s goals, and to develop one’s knowledge and potential (does not measure the ability to communicate orally)

Source: Sheida White, Assessing the Nation’s Health Literacy: Key Concepts and Findings of the National Assessment of Adult Literacy (2008)

NAAL FINDING OF PERCENTAGE OF ADULTS AT EACH HEALTH LITERACY LEVEL BY RACE/ETHNICITY

9

24

41

13

25

9

19

34

25

18

23

28

58

41

31

52

45

59

14

4

18

7

3

2

0% 20% 40% 60% 80% 100%

White

African American

Hispanic

Asian/Pacific Islander

AmericanIndian/Alaskan Native

Multiracial

Rac

e/E

thni

city

Percentage

Below Basic

BasicIntermediate

Proficient

Source: Sheida White, Assessing the Nation’s Health Literacy: Key Concepts and Findings of the National Assessment of Adult Literacy (2008)

KEY PROVISIONS OF THE PATIENT PROTECTION

AND AFFORDABLE CARE ACT (H.R. 3590) • SEC. 5002. DEFINTIONS: Health Literacy (the degree to

which an individual has the capacity to obtain, communicate, process, and understand health information and services in order to make appropriate health decisions)

• SEC. 5307. CULTURAL COMPETENCY, PREVENTION, AND PUBLIC HEALTH AND INDIVIDUALS WITH DISABILITIES TRAINING: emphasizing collaboration between several groups (e.g. community-based organizations, licensing and accreditation schools, health professional societies) to adopt culturally competent measures

• SEC. 5301. TRAINING IN FAMILY MEDICINE, GENERAL INTERNAL MEDICINE, GENERAL PEDIATRICS, AND PHYSICIAN ASSISTANTSHIP: preference and priority in awarding grants or contracts to qualified applicant accredited schools of medicine will go to those who provide training in culturally competency and health literacy (as one of other considerations)

KEY PROVISIONS OF THE PATIENT PROTECTION AND AFFORDABLE CARE ACT

CONTINUED…

• SEC. 3501. HEALTH CARE DELIVERY SYSTEM RESEARCH: establishing the functions of the Center for Quality Improvement and Patient Safety of the Agency for Healthcare Research and Quality, among them is to make the research findings of the Center available to the public through multiple media and appropriate formats to reflect the varying needs of health care providers and consumers and diverse levels of health literacy

KEY PROVISIONS of the PATIENT PROTECTION AND AFFORDABLE CARE ACT CONTINUED…

• SEC. 3506. PROGRAM TO FACILITATE SHARED DECISIONMAKING: REQUIREMENTS FOR PATIENT DECISION AIDS - Patient decision aids developed and produced pursuant to a grant or contract shall present evidence about the risks and benefits of treatment options in a form and manner that is age-appropriate and can be adapted for patients, caregivers, and authorized representatives from a variety of cultural and educational backgrounds to reflect the varying needs of consumers and diverse levels of health literacy

TITLE VI OF THE CIVIL RIGHTS ACT OF 1964

“No person in the United States shall, on the ground of race, color, or national origin, be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.” –Lau v. Nichols (1974) - the Supreme Court

interprets language discrimination as equivalent to national origin discrimination

Alexander v. Sandoval (2001) – a class action suit against the Alabama Department of Public Safety for requiring that all state driver’s license tests be administered in English only; a divided Supreme Court held private individual actions to enforce the disparate impact regulations promulgated under Title VI are prohibited

• A huge blow to equitable health care by undermining the ability to address systemic discrimination that takes place in the health care system

Title VI of the Civil Rights Act of 1964

0

10

20

30

40

50

60

70

80

White Black Hispanic/Latino Asian/PacificIslander

Other race/MultipleRaces

PrivatePublicUninsured

Health Insurance Coverage and Population Characteristics-all Ages, Medical Expenditure Panel Survey Home, http://www.meps.ahrq.gov/mepsweb/data_stats/summ_tables/hc/hlth_insr/2009/t1_a09.htm.

Health Insurance Coverage

Uninsured Persons and Uninsured Rate Between 1987-2009

50.7 million

16.7%

Source: New England Journal of Medicine, Health Policy and Reform, Data Watch Sept. 22, 2010; U.S. Census Bureau, Current Population Survey, 1988-2010 Annual Social and Economic Supplements

Uninsured Rates for the Nonelderly by Race/Ethnicity

United States (2008)

18.5

12.7

20.6

32.2

0

5

10

15

20

25

30

35

Other White Black Hispanic

Race/Ethnicity

Pe

rce

nta

ge

10.4

14

18.9

11.4

9.3

16

45.2

12

11

19.7

25.9

05

101520253035404550

Per

cen

tag

e

Pennsylvania Maryland Illinois

State

Individual State Rates (2008)

Other White Black Hispanic

Note: 1.Nonelderly = 0-64 years of age, 2.Insufficent data available for PA’s uninsured nonelderly ‘other’ categorySource: The Kaiser Family Foundation, statehealthfacts.org, http://www.statehealthfacts.org/comparetable.jsp?ind=143&cat=3

Distribution of Nonelderly Uninsured by Race/Ethnicity (2008)

4.8%

5.5%

47.9%

73.9%

35%

20.8%

13%

33.3%

26.5%

9.5%

26.2%

0% 20% 40% 60% 80% 100%

Illinois

Pennsylvania

Maryland

Sta

te

Percentage

OtherWhiteBlackHispanic

Note: 1. Nonelderly = ages 0-64 years of age 2. Insufficient data for Pennsylvania’s ‘other’ race/ethnicity category of nonelderly uninsured 3. Persons of Hispanic origin may be of any race; all other racial/ethnic groups are non-HispanicSource: The Kaiser Family Foundation, statehealthfacts.org, http://www.statehealthfacts.org/comparebar.jsp?ind=138&cat=3

HEALTH CARE DECISION-MAKING: LEGAL RIGHTS AND DUTIES

• PATIENT AUTONOMY

• PHYSICIAN AUTHORITY

• THIRD PARTY PAYER POWER

• PATIENT TRUST

REALITY OF DECSIONMAKING

• PROVIDERS SET STANDARD OF CARE

• INSURERS SET STANDARD OF CARE

• PATIENT AUTNTOMONY LIMITED BY ACCESS AND KNOWLEDGE

PATIENTS’ KNOWLEDGE AND VALUES

• HEALTH LITERACY

• VALUES: CULTURAL, RELIGIOUS ECONOMIC

• INFLUENCE OF FAMILY

• INFLUENCE OF CHURCH

• INFLUENCE OF MEDIA

• INFLUENCE OF GOVERNMENT

Three Important Books

• James Jones, Bad Blood

• Anne Fadiman, The Spirit Catches You and You Fall Down

• Rebecca Skloot, The Immortal Life of Henrietta Lacks

LAW OF INFORMED CONSENT

• Canterbury v. Spence, 464 F.2d 772 (D.C. Cir. 1972)Patient has a right to know risks, benefits

alternatives

• Autonomy: Patient has a right to make decisions others consider irrational or unreasonable

INFORMED REFUSAL

• Truman v. Thomas, 611 P. 2d 902 (Cal. 1980)

• Patient refuses pap smear

• Patient dies from cervical cancer

• Family sues patient’s family doctor who recommended pap smear but did not explain risk of not having the test done

• Court rules doctor had duty to advise of risk of harm associated with refusing test

Key Sources • Institute of Medicine Report – Unequal Treatment:

Confronting Racial and Ethnic Disparities in Health Care (2002), Edited by Brian Smedley, Adrienne Stith, and Alan Nelson

• CDC Health Disparities and Inequalities Report 2011, MMWR, Vol 60 available at http://www.cdc.gov/mmwr/pdf/other/su6001.pdf

• Institute of Medicine – Health Literacy: A Prescription to End Confusion (2004)

• Patient Protection and Affordable Care Act, a study of key provisions available at http://www.jointcenter.org/hpi/sites/all/files/PatientProtection_PREP_0.pdf

• The Kaiser Family Foundation, www.statehealthfacts.org

Documents

Health Disparities: Visions of a New Approach to Health Care Frank McClellan Beck Chair Professor of Law, Co-Director Center of Health Law, Policy and