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OCR for page 41
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Changing Consumer Aptitudes
The empowerment of certain groups in U.S. society, from minorities to
women, from gays and lesbians to health care consumers and patients, has
contributed new and distinct voices to the debate surrounding advances in
medicine and health policy.
Society's Choices: Social and Ethical
Decision Making in Biomedicine (1995'
~ s patients, purchasers of health care and health products, and
[] subjects of clinical research, consumers are becoming activists.
AThey demand and use ~nfo~ation about medical treatments,
drugs, and dietary supplements, as well as about the standards that are
applied to protect their health through regulatory policies or other gov-
ernment actions. Activism will increase as education levels rise and the
Internet democratizes access to information- some scientifically
sound, some unreliable. Growing numbers of consumers also are be-
coming wary of institutions and health professionals arid distrusted of
government. These changes In public attitudes and actions offer both
opportunities and challenges to public officials at the national, state,
and local levels who will shape and manage health care programs.
The Institute of Medicine conducts studies that directly assist con-
sumers by providing authoritative advice on pressing, and often con-
fi~sing, health issues. Consumers also benefit indirectly, as our reports
guide health professionals, institutions providing health care services,
and federal agencies in designing and managing programs that offer
high-quality care and support informed choice.
41
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Informing the Future: Critical Issues in Health
Acute Respiratory FailurelMOSF w ith Sepsis
MOSF w ith Malignant Condition
Cone
Lung Cancer
Colon Cancer
Cirrhosis
Congestive Heart Failure
Chronic Obstructive Pulmonary Disease
Persons ~ 80 Years Old
0 10 20 30 40 50 60 70 80 90
Patients (%)
O Able to CorTrr~nicate · Conscious
Rates of consciousness and the ability to communicate in the 3 days before
death as reported by family members of severely ill hospitalized patients. A pa-
tient's cognitive abilities may have a significant effect on caregivers, including
their inclination to deny impending death or to become more emotionally distant.
MOSF = multiple organ system failure. SOURCE: Approaching Death: Improving
Care at the End of Life, 1997; page 43.
SUPPORTING CONSUMER CHOICE
Just as more people are paying attention to the quality of their lives,
they also are becoming increasingly concerned about how they may
die. Approaching Death: Improving Care at the Erldt of fife (~1997)
focuses on the numerous complex is-
~Just as more people are paying sues that face people who are dying,
attention to the quality of their their families, and their caregivers.
lives, they also are becoming The report presents what we know
increasingly concerned about how about care at the end of life, what we
they may clie. have yet to learn, and what we know
42
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Changing Consumer Attitudes
but do not adequately apply. It seeks to build understanding of what
constitutes good care for the dying and offers recommendations to
policyrnakers that address specific barriers to achieving good care.
More than I.5 million women in the United States
have silicone breast implants. Most of these women say
they are very satisfied with their implants, but some
women have experienced complications that require sur-
gery or even removal of the implants. Others claim that
their implants have caused even more serious health
problems. Safety of Silicone Breast Implants (2000)
evaluates the evidence for associations of these devices
with human health conditions. Implants do not appear to
cause major diseases of the whole body. Problems with
implants appear to be local, but not life-threatening, com-
plications. Dunng the early years of breast implants,
women considenng surgery often were not given much
information about possible complications or the likelihood that the
implants would not last forever.
~~W ..-...-..
Hi.
I,..,.
:
..... -;,.,. ,~ ~ .~ ~
IF
Can marijuana relieve health problems? Is it safe for medical use?
Public opinion on the medical value of manjuana has been sharply
divided, with proponents on both sides citing "scientific evidence" to
support their views. Marijuana andt Medicine: Assessing the Science
Base (1999) reviews the science behind manjuana's actions aIld ex-
amines the efficacy of therapeutic uses
of manjuana. The report finds that can- Public opinion on the medical
nabinoid drugs—that is, drugs that act in value of marijuana has been
ways similar to the primary active in- sharply divicled, with proponents
gredient in marijuana may have a role on both sides citing "scientific
to play in medicine in such areas as pain eviclence" to support their views.
relief and appetite stimulation. Yet, for
several reasons, the fixture of cannabinoid drugs lies not in smoked
marijuana but in chemically defined drugs whose actions can be bet-
ter controlled. To cover the penod until such drugs are available, the
report calls for continued basic research and for clinical trials under
limited circumstances and with strict oversight.
43
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Informing the Future: Critical Issues in Health
For each of these three reports, the lOM has produced consumer-
onented surnmanes to help members of the general public—espe-
cially individuals and their families who face or expect to face such
issues understand the scientific facts and the available options.
PROVIDING AUTHORITATIVE ADVICE
Better information about food and nutrition can help improve con-
sumer choices. Numerous reports by our Food arid Nutrition Board
have established the recommended daily intake levels of vitamins and
minerals and the maximum levels of nutrients which pose no risk of
adverse effects due to overconsumption. Changes in food labeling
laws, the use of nutrient recommendations in determining minimum
levels of foods provided in public and private programs, and other
recent developments point to a need for a
Better information about food comprehensive approach to reviewing cur-
and nutrition can help improve rent dietary recommendations. A series of
consumer choices. IOM reports on Dietary Reference Intakes
(DRIB) provide quantitative estimates of
nutrients individuals need to optimize their health, prevent disease
and deficiencies, arid avoid adverse affects due to consuming too
much of a nutrient. DRIs have been developed for a variety of vita-
mins and minerals; macronutnents, such as protein, fat, and carbohy-
drates; trace elements, such as iron and zinc; and antioxidants, such as
selenium. DRIs for water and electrolytes, such as sodium and potas-
sium, and for other food components, such as fiber and phytoestro-
gens, are in the process of being reviewed and developed.
The number of Americans who use complementary and alterna-
tive medical therapies has grown rapidly in recent years. With in-
creased use comes increased need for scientific investigation and un-
derstanding of whether these therapies are safe and effective. The
lOM is reviewing complementary and alternative therapies used by
the American public. In addition to examining issues of safety and
effectiveness, the report will explore whether people using these
therapies delay seeking conventional treatments, differences in how
diverse cultural and ethnic groups use these therapies, how open and
44
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Changing Consumer Attitudes
under what conditions physicians make referrals for these therapies,
and the extent that insurance companies pay for them.
Of the many interventions that appear to be important in preserv-
ing and maintaining physical arid mental health in older women, hor-
mone replacement therapy has attracted the greatest interest. The
lOM plans to review the current science related to hormone replace-
ment therapy. The resulting report will address issues regarding dos-
age, delivery mechanisms, and timing of initiation and cessation of
therapy to maximize health outcomes and reduce adverse effects. It
also will examine the role of hormone replacement therapy as part of
a comprehensive health promotion and disease prevention program,
when combined with other healthy behaviors, such as diet, exercise,
and weight control.
For nearly 50 years, public concern and scientific de-
bate have surrounded the program of aboveground nu-
clear weapons testing that the United States conducted in
Nevada dunng the period from 19S] to 1962. Concern
about radioactive fallout north and east of the Nevada
Test Site began to emerge soon after weapons testing be-
gan. During the late 1980s, the National Cancer Institute
INCH began assessing the level of radiation exposure that
Americans may have received from radioactive iodine
released dunng atomic bomb tests, and NCT later issued a
report with this information. The NOM/NRC report Expo-
sure of the American People to Iodine-131 from Nevada
Nuclear-Bomb Tests: Review of the National Cancer In-
stitute Report and Public Health Implications (1999) provides art
evaluation of the soundness of the methodologies used by the NCT to
estimate past radiation doses, detect possible health consequences of
exposure to iod~ne-13l, identify implications for clinical practice, arid
construct possible public health strategies to respond to the exposures,
such as systematic screening for thyroid cancer. The report also pro-
vides an evaluation of the NCI estimates of the number of thyroid
cancers that might result Tom the nuclear testing program and offers
guidar~ce on approaches the U.S. government might use to communi-
cate with the public about iodine-13 1 exposures and health risks.
EXPOSURE UF THE AA,ERICAS PEOPLE TO
IODINE-] 31
FB851 NEVABA \IUCLEAR-B8~MB TESTS
45
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Informing the Future: Critical Issues in Health
EXPOSURE RISK ASSESSMENTS
Veterans, they relatives, and their representatives have long been an
active voice arguing for more infonnation and for a larger say on issues
that affect their health. The TOM has conducted a number of studies
designed to assess the health effects on Unitary personnel and civilians
of exposure to toxic substances during deployment ~ themes of war or
proximity to nuclear weapons testing.
Congress, veterans groups, and These studies not only provide the
other interested parries have relied government agencies that request them
upon the lOM to provide authorita- with the latest scientific information
and evaluations, but also serve as ~bi-
tive assessments of these risks
and what is known about their ased sources of information for the in-
consequences. dividuals whose health may have been
jeopardized by their service or by de-
fense weapons production. A legacy of cold war secrecy is the con-
tinliing distrust of the gove~nment's honesty in assessing and revealing
these nsks. Congress, veterans groups, and other interested parties have
relied upon the TOM to provide authoritative assessments of those risks
and what is known about their consequences.
Among the studies, Veterans at Risk (1993) assessed the long-tenn
health consequences among World War II veterans of exposure to
mustard agents. A series of studies, beginning with Veterans arid
Agent Orange: Health Effects of Herbicides Used ir' Vietnam (~1993),
has focused on exposure to herbicides (and their contaminants, nota-
bly dioxin) used during the Vietnam War. We currently are working
on Update 2000, the fourth volume in this senes. Gulf War Veterans:
Measuring Health (1999) examined He evidence of adverse health
effects from exposure to certain chemicals, drugs, and vaccines known
to be present dunug the war in the Persian Gulf. Much remains un-
known about such effects, and we now have a major study ureter way
to assess exposures to 33 toxic agents that Gulf War veterans may
have encountered dunug their service.
All U.S. military personnel now are vaccinated against anthrax.
The first service-related vaccinations occulted in 199~199l, when
reports that Iraq had produced weapons containing anthrax spores
46
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Changing Consumer Attitudes
during the Gulf War fi~eled fears of the potential use of anthrax as a
biological weapon. Since vaccination became the official military pol-
icy in ~ 99S, some soldiers and other observers have expressed concern
about the safety of receiving the vaccine. The TOM has two studies un-
der way to evaluate the health risks associated with anthrax vaccine.
The Safety and Efficacy of Anthrax
Vaccine for the U.S. Military, re- Sincevaccination [against anthrax]
quested by the Department of De- became the official military policy in
fense, will examine such issues as the 199B, some soldiers and other
types and seventy of adverse reac- observers have expressed concern
lions, including gender differences; about the safety of receiving the
long-term health implications; effi- vaccine.
cacy of the vaccine against all known
anthrax strains; validation of the manufacturing process; and gaps in
existing research. Review of the CDCAr~thrax Vaccine Safety and Effi-
cacy Collaborative Research Program will advise the Centers for Dis-
ease Control and Prevention on the completeness and appropriateness
of its proposed plan for assessing the range of issues related to ensuring
safe and efficient use of the vaccine.
47
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Seiectec! Recommendations for Behavioral and
Social Science . . .
Investments in Young Children: The president should establish a task
force to review all public investments in childcare and early childhood educa-
tion, with the goal of making the most of scientific knowledge about early
childhood. The task force should be charged to develop a 10-year plan that
focuses on ways to foster sustained relationships between preschoolers and
qualified caregivers; that addresses the special needs of children with devel-
opmental disabilities or chronic health conditions; and that ensures that all
child-care settings are safe, stimulating, and responsive to families' concerns.
Further, the major current sources of funding for childcare and early educa-
tion should support initiatives aimed at increasing the qualifications, pay and
benefits of child-care professionals. (From Neurons to Neighborhoods: The
Science of Early Childhood Developmenfl
Interdisciplinary Research and Training: Because behavioral change is
complex, successful intervention efforts are similarly complex and require the
contributions of behavioral and social sciences, clinical medicine, and genet-
ics, as well as other fields such as education. Advances in the behavioral and
social sciences depend upon research that draws on multiple disciplines.
Training programs need to provide scientific breadth to encourage work
across disciplinary boundaries. The NIH and other federal research agencies
should implement peer-review procedures that facilitate cross-disciplinary
efforts and require universities to implement supportive policies for scientists
working across disciplines. (Bridging Disciplines in the Brain, Behavioral, and
Clinical Sciences)
.
Focus on Minorities: The newly established program of behavioral and so-
cial science research at NCI addresses an area of research that has been
neglected in the past. The program should identify as one of its highest pri-
Orities a focus on cancer prevention, control and treatment needs of ethnic
minority and medically underserved groups. (The Unequal Burden of Cancer:
An Assessment of NIH Research and Programs for Ethnic Minorities and the
Medically Undersexed
Social and Behavioral Determinants of Health: Social and behavioral
factors have a broad and profound impact on health across a wide range of
conditions and disabilities. A better balance is needed between the clinical
approach to disease, presently the dominant public health model for most
risk factors, and research and intervention efforts that address generic social
and behavioral determinants of disease, injury, and disability. (Promoting
Health: Intervention Strategies from Social and Behavioral Research)
Representative terms from entire chapter:
critical issues
