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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
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 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
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
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
All Races White AfricanAmerican
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
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
15.2 15.614.5
24.8
7.6
14.7
0
5
10
15
20
25
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
4.2
2.2
19.4
2.7
0.6
4.7
0
5
10
15
20
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
9.0 9.27.7
22.6
3.6
13.9
0
5
10
15
20
25
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
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
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
183.8 182.6
222.7
123.2110.5
122.8
0
50
100
150
200
250
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
46.6 44.7
65.2
34.838.6
35.7
0
10
20
30
40
50
60
70
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
24.522.6
53.3
17.6
10.4
18.5
0
5
10
15
20
25
30
35
40
45
50
55
60
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
52.6 53.1
58.4
34.1
25.722.4
0
5
10
15
20
25
30
35
40
45
50
55
60
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
43.245.4
30.629.1
14.9
19.3
0
5
10
15
20
25
30
35
40
45
50
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
24.1 23.4
32.8
15.2
12.2
15.0
0
5
10
15
20
25
30
35
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
17.5 16.9
24.8
12.011.2
12.4
0
5
10
15
20
25
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
20.3 20.221.7
20.4
15.516.8
0
5
10
15
20
25
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
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