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 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
90
80.4
80
70
76.2
69.2
72.9
75.6
78.1
83.1
77.9
80.6
Years
60
Male
Female
Total
50
40
30
20
10
0
Black
White
Hispanic
Race
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
AGE
1979-80
ALL WOMEN
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
Age
1992-93
Nonwhite Men
1997-98
1992-93
1997-98
White Men
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
15.9
15.4
16.7
17.9
20.3
21.0
40
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
Source: CDC, NCHS, Health, United States, 2008, Table
18 http://www.cdc.gov/nchs/data/hus/hus08.pdf
&
U
nk
no
w
n
o
an
4.4
La
tin
Am
er
ic
5.5
an
ic/
h
Hi
sp
So
ut
Cu
ba
n
n
5.6
Ri
ca
n
c
4.9
M
ex
ica
pa
ni
5
Hi
s
Is
la
nd
er
ive
8.1
O
th
er
c
Na
t
an
5.7
Pu
er
to
ac
ifi
Al
as
ka
Am
er
ic
10
Ce
nt
ra
l&
an
/P
In
di
an
/
13.6
As
i
an
c
an
i
ca
n
Af
ri
No
nHi
sp
W
hi
te
c
an
Am
er
ic
pa
ni
Ra
ce
s
No
nHi
s
Al
l
5.8
er
ic
ca
n
Am
Af
ri
W
hi
te
Infant Mortality Rate per 1,000 Live Births
15
13.3
8.3
6.9
6.4
4.7
0
Age-Adjusted Death Rate per 100,000 Live
Births
99.1
100
80
60
50.3
50.7
42.4
40
23.5
20
0
All Races
Non-Hispanic
White
White
African
American
Hispanic
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
Age-Adjusted Maternal Mortality Rate
per 100,000 Persons
35
31.7
30
25
20
15
12.4
10
9.6
9.1
Non-Hispanic
White
White
8.2
5
0
All Races
African
American
Source: CDC, NCHS, Health, United States, 2008, Table 42.
http://www.cdc.gov/nchs/data/hus/hus08.pdf
Hispanic
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)
50
Percentage
40
30
20
25.2%
17.9%
20.1%
10
0
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
20%
7%
Patients' Personal
Physcians
Emergency
Departments
Specialists
Outpatient
Departments
42%
28%
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
Hospital Outpatient
Department
25.1
Setting
All Other Specialties
71.8
General Pediatrics
45.7
General Internal
Medicine
36.2
General
Family/Practice
77
Emergency
Department
97.9
0
20
40
60
80
100
Millions
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 Ambulatory Visits
by Setting
Type of Visit
Millions of Visits Annually 20012004
Routine Follow-up visits/nonillness visits
0.0
Follow-up acute
visits/postoperative visits
6.2
Acute care visits
Total
97.9
104.1
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
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
Year
Race/Ethnicity
1997
2000
2006
2007
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
White
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
Visits per 1,000 Population
PA, MD and IL Hospital Emergency
Room Visits Per 1,000 Population
2005-2008
480
460
Pennsylvania
Maryland
Illinois
440
420
400
380
Pennsylvania
Maryland
Illinois
2005
2006
2007
2008
434
386
393
450
410
398
464
407
394
478
403
399
Year
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
Unnatural Causes: Video Trailer
http://www.unnaturalcauses.org/video_clips_detail.php?res_id=80
Health Disparities
Communities of Color
are Disproportionately Affected
What is a “Health Disparity?”
Conceptual Issues
• Inequality
• Difference in condition, rank
• Lack of equality as of opportunity,
treatment, or status
• Inequity
– Unfair and unjust
– Unnecessary and avoidable
“Health Disparity” in Public
Health – Operational Definition
• Quantitative measures: rates, percents,
means…
• The Quantity that separates a group from
a reference point on a particular measure
of health
• Calls attention to differences in health
between groups regardless of cause
• Can be measured in absolute or relative
terms
Population
of the United States by Race & Hispanic Origin:
2008 & Projected 2050
% Percent of Total U.S. Population
100
Non-Hispanic White
90
African American
80
American Indian / Alaska Native
70
66
Asian
60
Hispanic/Latino
46
50
40
30
30
20
10
15
14
1.6
5.1
15
9.2
2
0
2008
2050
Source: U.S. Census Bureau, 2008 National Population Projections, August 14, 2008
http://www.census.gov/Press-Release/www/releases/archives/population/012496.html
Racial and Ethnic Minority
Populations
•
•
•
•
•
American Indian/Alaska Native (AI/AN)
Asian American
Black or African American
Hispanic or Latino
Native Hawaiian or Other Pacific Islander
(NHOPI)
Other Populations By . . .
•
•
•
•
•
•
Socio-economic status
Geography (urban or rural)
Gender
Age
Disability status
Risk status related to sex and gender
Age-Adjusted Death Rate per 100,000 Persons
1200
1016.5
1000
798.8
800
785.3
663.4
590.7
600
440.2
400
200
0
All Races
White
African
American
American Asian/Pacific
Indian/Alaska
Islander
Native
Hispanic
Age-Adjusted Death Rate per 100,000 Persons
300
271.3
Heart Disease
Cancer
Stroke
250
222.7
211.1
200
207.8
183.8
182.6
157.3
141.8
150
123.2
113.3110.5
122.8
100
65.2
50
46.6
44.7
34.8
38.6
35.7
0
All Races
White
African
American
American
Indian/Alaska
Native
Asian/Pacific
Islander
Hispanic
Age-Adjusted Death Rate per 100,000 Persons
50
46.9
45
41.5
40
33.6
35
30
25
24.6
22.5
20
16.6
15
10
5
0
All Races
White
African
American
American
Asian/Pacific
Indian/Alaska
Islander
Native
Hispanic
Age-Adjusted Death Rate per 100,000 Persons
24.8
25
20
15.2
15.6
15
14.7
14.5
10
7.6
5
0
All Races
White
African
American
American Asian/Pacific
Indian/Alaska
Islander
Native
Hispanic
Age-Adjusted Death Rate per 100,000 Persons
19.4
20
15
10
5
4.7
4.2
2.7
2.2
0.6
0
All Races
White
African
American
American Asian/Pacific
Indian/Alaska
Islander
Native
Hispanic
Age-Adjusted Death Rate per 100,000 Persons
25
22.6
20
13.9
15
10
9.0
9.2
7.7
5
3.6
0
All Races
White
African
American
American Asian/Pacific
Indian/Alaska
Islander
Native
Hispanic
30
Age-Adjusted Cases per 100,000 Persons
25.8
25
23.4
20
15
9.3
10
8.4
6.0
5
0
0.8
1.1
Multi Racial
non-Hispanic
White
non-Hispanic
Black
American Indian
/ Alaska Native
(AI/AN)
Asian American
Hispanic/Latino
Native Hawaiian
& Other Pacific
Islanders
(NHOPI)
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
Age-Adjusted Cases per 100,000 Persons
3
2.3
2
1.2
1.1
1.1
1
0
White non-Hispanic
Black non-Hispanic
Source: CDC MMWR, V57, SS2, March 21, 2008, p5.
http://www.cdc.gov/mmwr/PDF/ss/ss5702.pdf
Asian/Pacific Islander
Hispanic/Latino
Age-Adjusted Death Rate per 100,000 Persons
300
271.3
250
211.1
207.8
200
157.3
141.8
150
113.3
100
50
0
All Races
White
African
American
American
Asian/Pacific
Indian/Alaska
Islander
Native
Hispanic
Age-Adjusted Death Rate per 100,000 Persons
250
222.7
200
183.8
182.6
150
123.2
122.8
110.5
100
50
0
All Races
White
African
American
American
Asian/Pacific
Indian/Alaska
Islander
Native
Hispanic
Age-Adjusted Death Rate per 100,000 Persons
70
65.2
60
50
46.6
44.7
38.6
40
34.8
35.7
30
20
10
0
All Races
White
African
American
American
Asian/Pacific
Indian/Alaska
Islander
Native
Hispanic
Age-Adjusted Death Rate per 100,000 Persons
60
55
53.3
50
45
40
35
30
25
24.5
22.6
18.5
17.6
20
15
10
10.4
5
0
All Races
White
African
American
American
Asian/Pacific
Indian/Alaska
Islander
Native
Hispanic
Age-Adjusted Death Rate per 100,000 Persons
60
55
58.4
52.6
53.1
50
45
40
34.1
35
30
25
25.7
22.4
20
15
10
5
0
All Races
White
African
American
American
Asian/Pacific
Indian/Alaska
Islander
Native
Hispanic
Age-Adjusted Death Rate per 100,000 Persons
50
45
43.2
45.4
40
35
30.6
30
29.1
25
19.3
20
14.9
15
10
5
0
All Races
White
African
American
American
Asian/Pacific
Indian/Alaska
Islander
Native
Hispanic
Age-Adjusted Death Rate per 100,000 Persons
35
32.8
30
25
24.1
23.4
20
15.2
15
15.0
12.2
10
5
0
All Races
White
African
American
American
Asian/Pacific
Indian/Alaska
Islander
Native
Hispanic
Age-Adjusted Death Rate per 100,000 Persons
24.8
25
20
17.5
16.9
15
12.0
12.4
11.2
10
5
0
All Races
White
African
American
American
Asian/Pacific
Indian/Alaska
Islander
Native
Hispanic
Age-Adjusted Death Rate per 100,000 Persons
25
21.7
20.3
20.4
20.2
20
16.8
15.5
15
10
5
0
All Races
White
African
American
American
Asian/Pacific
Indian/Alaska
Islander
Native
Hispanic
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/fi
les/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, evidenceinformed 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
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
The U.S. Preventive Services Task Force (USPSTF) recommends
screening for high blood pressure in adults aged 18 and older.
A
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
Screening and counseling to
reduce alcohol misuse
Screening for high blood pressure
Screening for breast cancer
(mammography)
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).
The Importance of Poor Health Literacy
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).
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 Paye es
$3.4
Medicare
Employers
$7.6
$28.3
$10.3
Patients
Medicaid
Other Public
Other Private
$11.5
Dollars in Billions
$12.1
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
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 healthrelated 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
Multiracial
9
Race/Ethnicity
American
Indian/Alaskan Native
28
25
Asian/Pacific Islander
13
0%
9
7
52
25
19
18
31
34
20%
3
45
18
24
African American
Below Basic
Basic
Intermediate
Proficient
23
41
Hispanic
White
59
41
58
40%
4
60%
2
14
80%
100%
Percentage
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
Title VI of the Civil Rights Act of
1964
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
Health Insurance Coverage
Private
Public
Uninsured
80
70
60
50
40
30
20
10
0
White
Black
Hispanic/Latino
Asian/Pacific
Islander
Other race/Multiple
Races
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.
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
Individual State Rates (2008)
United States (2008)
35
32.2
25
Percentage
Percentage
30
20.6
20 18.5
12.7
15
10
5
50
45
40
35
30
25
20
15
10
5
0
45.2
25.9
19.7
18.9
14
16
10.4
9.3
Pennsylvania
Maryland
0
Other
White
Black
Race/Ethnicity
12
11.4
11
Illinois
State
Hispanic
Other
White
Black
Hispanic
Note: 1.Nonelderly = 0-64 years of age, 2.Insufficent data available for PA’s uninsured nonelderly ‘other’ category
Source: The Kaiser Family Foundation, statehealthfacts.org, http://www.statehealthfacts.org/comparetable.jsp?ind=143&cat=3
Distribution of Nonelderly
Uninsured by Race/Ethnicity (2008)
State
Maryland 5.5%
35%
Pennsylvania
33.3%
13% 9.5%
73.9%
Illinois 4.8%
0%
47.9%
20%
40%
26.2%
20.8%
60%
Other
White
Black
Hispanic
26.5%
80%
100%
Percentage
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-Hispanic
Source: 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/PatientProtect
ion_PREP_0.pdf
• The Kaiser Family Foundation, www.statehealthfacts.org