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Consumer Bill of Rights and Responsibilities
Table of Contents
Executive
Summary
Preamble
Chapter
One: Information Disclosure
Chapter
Two: Choice of Providers and Plans
Chapter
Three: Access to Emergency Services
Chapter
Four: Participation in Treatment
Decisions
Chapter
Five: Respect and Nondiscrimination
Chapter
Six: Confidentiality of Health
Information
Chapter
Seven: Complaints and Appeals
Chapter
Eight: Consumer Responsibilities
The Advisory Commission on Consumer
Protection and Quality in the Health Care Industry was
appointed by the President on March 26, 1997, to
"advise the President on changes occurring in the
health care system and recommend measures as may be
necessary to promote and assure health care quality and
value, and protect consumers and workers in the health
care system." As part of its work, the President
asked the Commission to draft a "consumer bill of
rights."
The Commission included 34 members and
was co-chaired by the
Secretary of Labor and the
Secretary of Health and Human Services. Its members
included individuals from a wide variety of backgrounds
including consumers, business, labor, health care
providers, health plans, State and local governments, and
health care quality experts.
Following is a summary of the eight
areas of consumer rights and responsibilities adopted by
the President's Advisory Commission on Consumer
Protection and Quality in the Health Care Industry:
- Information Disclosure Consumers
have the right to receive accurate, easily
understood information and some require
assistance in making informed health care
decisions about their health plans,1
professionals, and facilities.
This
information should include:
- Health plans: Covered benefits,
cost-sharing, and procedures for
resolving complaints; licensure,
certification, and accreditation status;
comparable measures of quality and
consumer satisfaction; provider network
composition; the procedures that govern
access to specialists and emergency
services; and care management
information.
- Health professionals: Education
and board certification and
recertification; years of practice;
experience performing certain procedures;
and comparable measures of quality and
consumer satisfaction.
- Health care facilities: Experience
in performing certain procedures and
services; accreditation status;
comparable measures of quality and worker
and consumer satisfaction; procedures for
resolving complaints; and community
benefits provided.
Consumer assistance programs must be carefully
structured to promote consumer confidence and to
work cooperatively with health plans, providers,
payers and regulators. Sponsorship that assures
accountability to the interests of consumers and
stable, adequate funding are desirable
characteristics of such programs.
- Choice of Providers and Plans Consumers have
the right to a choice of health care providers
that is sufficient to ensure access to
appropriate high-quality health care.
To
ensure such choice, health plans should provide
the following:
- Provider Network Adequacy: All
health plan networks should provide
access to sufficient numbers and types of
providers to assure that all covered
services will be accessible without
unreasonable delay -- including access to
emergency services 24 hours a day and
seven days a week. If a health plan has
an insufficient number or type of
providers to provide a covered benefit
with the appropriate degree of
specialization, the plan should ensure
that the consumer obtains the benefit
outside the network at no greater cost
than if the benefit were obtained from
participating providers. Plans also
should establish and maintain adequate
arrangements to ensure reasonable
proximity of providers to the business or
personal residence of their members.
Access
to Qualified Specialists for Women's
Health Services: Women should be able
to choose a qualified provider offered by
a plan -- such as gynecologists,
certified nurse midwives, and other
qualified health care providers -- for
the provision of covered care necessary
to provide routine and preventative
women's health care services.
Access to Specialists:
Consumers with complex or serious medical
conditions who require frequent specialty
care should have direct access to a
qualified specialist of their choice
within a plan's network of providers.
Authorizations, when required, should be
for an adequate number of direct access
visits under an approved treatment plan.
Transitional Care: Consumers
who are undergoing a course of treatment
for a chronic or disabling condition (or
who are in the second or third trimester
of a pregnancy) at the time they
involuntarily change health plans or at a
time when a provider is terminated by a
plan for other than cause should be able
to continue seeing their current
specialty providers for up to 90 days (or
through completion of postpartum care) to
allow for transition of care. Providers
who continue to treat such patients must
accept the plan's rates as payment in
full, provide all necessary information
to the plan for quality assurance
purposes, and promptly transfer all
medical records with patient
authorization during the transition
period.
Public and private group purchasers should,
wherever feasible, offer consumers a choice of
high-quality health insurance products. Small
employers should be provided with greater
assistance in offering their workers and their
families a choice of health plans and products.
- Access to Emergency Services Consumers have
the right to access emergency health care
services when and where the need arises. Health
plans should provide payment when a consumer
presents to an emergency department with acute
symptoms of sufficient severity -- including
severe pain -- such that a "prudent
layperson" could reasonably expect the
absence of medical attention to result in placing
that consumer's health in serious jeopardy,
serious impairment to bodily functions, or
serious dysfunction of any bodily organ or part.
To ensure this right:
- Health plans should educate their members
about the availability, location, and
appropriate use of emergency and other
medical services; cost-sharing provisions
for emergency services; and the
availability of care outside an emergency
department.
- Health plans using a defined network of
providers should cover emergency
department screening and stabilization
services both in network and out of
network without prior authorization for
use consistent with the prudent layperson
standard. Non-network providers and
facilities should not bill patients for
any charges in excess of health plans'
routine payment arrangements.
- Emergency department personnel should
contact a patient's primary care provider
or health plan, as appropriate, as
quickly as possible to discuss follow-up
and post-stabilization care and promote
continuity of care.
- Participation in Treatment Decisions Consumers
have the right and responsibility to fully
participate in all decisions related to their
health care. Consumers who are unable to fully
participate in treatment decisions have the right
to be represented by parents, guardians, family
members, or other conservators.
In order
to ensure consumers' right and ability to
participate in treatment decisions, health care
professionals should:
- Provide patients with easily understood
information and opportunity to decide
among treatment options consistent with
the informed consent process.
Specifically,
- Discuss all treatment options
with a patient in a culturally
competent manner, including the
option of no treatment at all.
- Ensure that persons with
disabilities have effective
communications with members of
the health system in making such
decisions.
- Discuss all current treatments a
consumer may be undergoing,
including those alternative
treatments that are
self-administered.
- Discuss all risks, benefits, and
consequences to treatment or
nontreatment.
- Give patients the opportunity to
refuse treatment and to express
preferences about future
treatment decisions.
- Discuss the use of advance directives --
both living wills and durable powers of
attorney for health care -- with patients
and their designated family members.
- Abide by the decisions made by their
patients and/or their designated
representatives consistent with the
informed consent process.
To facilitate greater communication between
patients and providers, health care providers,
facilities, and plans should:
- Disclose to consumers factors -- such as
methods of compensation, ownership of or
interest in health care facilities, or
matters of conscience -- that could
influence advice or treatment decisions.
- Ensure that provider contracts do not
contain any so-called "gag
clauses" or other contractual
mechanisms that restrict health care
providers' ability to communicate with
and advise patients about medically
necessary treatment options.
- Be prohibited from penalizing or seeking
retribution against health care
professionals or other health workers for
advocating on behalf of their patients.
- Respect and Nondiscrimination Consumers have
the right to considerate, respectful care from
all members of the health care system at all
times and under all circumstances. An environment
of mutual respect is essential to maintain a
quality health care system.
Consumers must
not be discriminated against in the delivery of
health care services consistent with the benefits
covered in their policy or as required by law
based on race, ethnicity, national origin,
religion, sex, age, mental or physical
disability, sexual orientation, genetic
information, or source of payment.
Consumers who are eligible for coverage under
the terms and conditions of a health plan or
program or as required by law must not be
discriminated against in marketing and enrollment
practices based on race, ethnicity, national
origin, religion, sex, age, mental or physical
disability, sexual orientation, genetic
information, or source of payment.
- Confidentiality of Health Information Consumers
have the right to communicate with health care
providers in confidence and to have the
confidentiality of their individually
identifiable health care information protected.
Consumers also have the right to review and copy
their own medical records and request amendments
to their records.
In order to ensure this
right:
- With very few exceptions, individually
identifiable health care information can
be used without written consent for
health purposes only, including the
provision of health care, payment for
services, peer review, health promotion,
disease management, and quality
assurance.
- In addition, disclosure of individually
identifiable health care information
without written consent should be
permitted in very limited circumstances
where there is a clear legal basis for
doing so. Such reasons include: medical
or health care research for which a
institutional review board has determined
anonymous records will not suffice,
investigation of health care fraud, and
public health reporting.
- To the maximum feasible extent in all
situations, nonidentifiable health care
information should be used unless the
individual has consented to the
disclosure of individually identifiable
information. When disclosure is required,
no greater amount of information should
be disclosed than is necessary to achieve
the specific purpose of the disclosure.
- Complaints and Appeals All consumers have the
right to a fair and efficient process for
resolving differences with their health plans,
health care providers, and the institutions that
serve them, including a rigorous system of
internal review and an independent system of
external review.
Internal appeals systems
should include:
- Timely written notification of a decision
to deny, reduce, or terminate services or
deny payment for services. Such
notification should include an
explanation of the reasons for the
decisions and the procedures available
for appealing them.
- Resolution of all appeals in a timely
manner with expedited consideration for
decisions involving emergency or urgent
care consistent with time frames
consistent with those required by
Medicare (i.e., 72 hours).
- A claim review process conducted by
health care professionals who are
appropriately credentialed with respect
to the treatment involved. Reviews should
be conducted by individuals who were not
involved in the initial decision.
- Written notification of the final
determination by the plan of an internal
appeal that includes information on the
reason for the determination and how a
consumer can appeal that decision to an
external entity.
- Reasonable processes for resolving
consumer complaints about such issues as
waiting times, operating hours, the
demeanor of health care personnel, and
the adequacy of facilities.
External appeals systems should:
- Be available only after consumers have
exhausted all internal processes (except
in cases of urgently needed care).
- Apply to any decision by a health plan to
deny, reduce, or terminate coverage or
deny payment for services based on a
determination that the treatment is
either experimental or investigational in
nature; apply when such a decision is
based on a determination that such
services are not medically necessary and
the amount exceeds a significant
threshold or the patient's life or health
is jeopardized.2
- Be conducted by health care professionals
who are appropriately credentialed with
respect to the treatment involved and
subject to conflict-of-interest
prohibitions. Reviews should be conducted
by individuals who were not involved in
the initial decision.
- Follow a standard of review that promotes
evidence-based decisionmaking and relies
on objective evidence.
- Resolve all appeals in a timely manner
with expedited consideration for
decisions involving emergency or urgent
care consistent with time frames
consistent with those required by
Medicare (i.e., 72 hours).
- Consumer Responsibilities In a health care
system that protects consumers' rights, it is
reasonable to expect and encourage consumers to
assume reasonable responsibilities. Greater
individual involvement by consumers in their care
increases the likelihood of achieving the best
outcomes and helps support a quality improvement,
cost-conscious environment. Such responsibilities
include:
- Take responsibility for maximizing
healthy habits, such as exercising, not
smoking, and eating a healthy diet.
- Become involved in specific health care
decisions.
- Work collaboratively with health care
providers in developing and carrying out
agreed-upon treatment plans.
- Disclose relevant information and clearly
communicate wants and needs.
- Use the health plan's internal complaint
and appeal processes to address concerns
that may arise.
- Avoid knowingly spreading disease.
- Recognize the reality of risks and limits
of the science of medical care and the
human fallibility of the health care
professional.
- Be aware of a health care provider's
obligation to be reasonably efficient and
equitable in providing care to other
patients and the community.
- Become knowledgeable about his or her
health plan coverage and health plan
options (when available) including all
covered benefits, limitations, and
exclusions, rules regarding use of
network providers, coverage and referral
rules, appropriate processes to secure
additional information, and the process
to appeal coverage decisions.
- Show respect for other patients and
health workers.
- Make a good-faith effort to meet
financial obligations.
- Abide by administrative and operational
procedures of health plans, health care
providers, and Government health benefit
programs.
- Report wrongdoing and fraud to
appropriate resources or legal
authorities.
American consumers and their families
are experiencing an historic transition of the U.S.
system of health care financing and delivery. In
establishing the Advisory Commission on Consumer
Protection and Quality in the Health Care Industry,
President Clinton asked that it advise him "on
changes occurring in the health care system and recommend
such measures as may be necessary to promote and assure
health care quality and value, and protect consumers and
workers in the health care system." As part of that
effort, the President has asked the Commission to draft a
Consumer Bill of Rights and Responsibilities.
This Commission includes 34 members
from a wide variety of backgrounds including consumers,
business, labor, health care providers, health plans,
State and local governments, and health care quality
experts. We hope our diversity of interests and
backgrounds will make our recommendations more valuable
to those who consider them.
This is an appropriate time to
reexamine and reconsider the methods by which our Nation
and the health care industry establish and protect the
rights and identify the responsibilities of those people
who use the health care system. The Commission believes
it is essential to preserve those elements of the
emerging system that have a positive impact on the
quality of care as well as the cost and availability of
health insurance coverage.
Development of a Consumer Bill of
Rights and Responsibilities is an important step forward
for all those involved in the health care system.
Consumers, health care professionals, administrators of
health care facilities, and those who operate health
plans will benefit from a clear set of unifying
standards. The Consumer Bill of Rights and
Responsibilities can help to establish a stronger
relationship of trust among consumers, health care
professionals, health care institutions, and health plans
by helping to sort out the shared responsibilities of
each of these participants in a system that promotes
quality improvement.
The work of this Commission builds on
the efforts of many others. The Commission reviewed
dozens of proposals prepared and released by a variety of
organizations3 that have addressed the
rights, responsibilities, and protection of consumers. We
have heard public testimony from dozens of individuals
and organizations. We are grateful for their
contributions.
The Consumer Bill of Rights and Responsibilities
charts a course for the continued enhancement of health
systems and processes that serve to protect consumers and
ensure quality. While the rights and responsibilities
included in this report are intended to apply to all
consumers and participants in the health care system, the
Commission recognizes that the strength of these
protections will grow over time as the capabilities of
the health care industry become more sophisticated.
Certain portions of the industry will require additional
time to make these adjustments, but the Commission
intends that the bulk of its recommendations be put in
place within the next 3 years.
The Consumer Bill of Rights and Responsibilities was
first drafted by the Subcommittee on Consumer Rights,
Protections, and Responsibilities. The Subcommittee met
in open session on seven separate occasions, and the
Commission met six times during that same time period.
The Subcommittee considered background papers on each
topic, heard public testimony on most topics, and
considered two or three drafts of each chapter. At each
point in that process, the Subcommittee briefed the full
Commission on its work and received feedback on those
issues. The Commission also has considered draft chapters
and revised drafts reflecting the input of its members.
Throughout this process, the Subcommittee and the
Commission have operated on a consensus basis that has
allowed any member to place an issue before the
respective body for consideration. The list of issues was
refined to reflect the discussions of the Subcommittee
and the Commission. The final product reflects the areas
of overall agreement expressed by Commission members.
Objectives of a Consumer Bill of Rights and
Responsibilities
The Consumer Bill of Rights and Responsibilities is
intended to accomplish three major goals.
First, to strengthen consumer confidence by assuring
the health care system is fair and responsive to
consumers' needs, provides consumers with credible and
effective mechanisms to address their concerns, and
encourages consumers to take an active role in improving
and assuring their health.
Second, to reaffirm the importance of a strong
relationship between patients and their health care
professionals.
Third, to reaffirm the critical role consumers play in
safeguarding their own health by establishing both rights
and responsibilities for all participants in improving
health status.
- Guiding Principles for the Consumer Bill of
Rights and Responsibilities
The work of
the Commission was guided by the following
principles:
- All consumers are created equal.
The work of this Commission in
establishing a Bill of Rights and
Responsibilities must apply to all
consumers. This includes all
beneficiaries of such public programs as
Medicare, Medicaid, the Department of
Veterans Affairs, and the Department of
Defense, as well as Federal, State, and
local government employees. It also
includes all those who have private
insurance, including those who purchase
their own insurance, those who work for
companies that have self-funded health
plans, and those who work for companies
that purchase insurance for their
employees and dependents. And, finally,
to the extent possible, these rights
should be accorded to those who have no
health insurance but use the health care
system.
Quality comes first.
The first question we asked ourselves in
each circumstance was: Will this improve
the quality of care and of the system
that delivers that care? Sometimes this
led us to reject policy options that we
believe could hinder the progress our
Nation has made toward a health care
system that is focused on improving
quality through accountable organized
systems.
Preserve what works. There are
elements of managed care and of indemnity
coverage that must be changed to protect
the rights of consumers. But there also
are elements of each system that have
improved quality and expanded access. We
have tried to make sure that we preserve
what works while we address areas that
can and should be improved.
Costs matter. Although a
comprehensive cost-analysis was not
performed for this Bill of Rights and
Responsibilities, the Commission has
sought to balance the need for stronger
consumer rights with the need to keep
coverage affordable. We recognize that,
in some circumstances, rights may create
additional costs for employers; health
plans; Federal, State, and local
governments; and consumers. We also
recognize that ultimately consumers can
bear these costs in the form of lower
wages, higher prices, higher taxes, or
reduced benefits in other areas. The
Commission believes some components of
the Bill of Rights may also enhance the
efficiency and effectiveness of the
health care marketplace. While these
efficiencies cannot be well calculated,
they may help to offset some cost
increases. The Commission has attempted
to weigh these factors carefully and
support recommendations that may prompt
additional spending in cases where such
spending may represent an investment in
higher quality health care and better
health outcomes.
Goals for Consumer Protection in a
Quality-Focused Health Care System
A Consumer Bill of Rights and Responsibilities
is, by its nature, a snapshot of what is needed
at a particular time. The rights enumerated in
this report are intended to move the health care
system in a direction that is consistent with a
system of health care delivery that is focused on
obtaining the highest quality and best outcome
for consumers and their families. In that light,
the Commission has identified a series of goals
for the continued reform of the American health
care system that will maximize consumer rights in
a system that focuses on quality.
- Health coverage is the best consumer
protection. A health care system that
leaves more than 41 million Americans
without health coverage cannot adequately
protect the rights of consumers and their
families. The fact that so many Americans
live day in and day out without the
security that health coverage provides is
intolerable. Recent trends reported by
the U.S. Census Bureau that the number of
uninsured Americans rose by one million
between 1996 and 1997 are cause for great
concern. Moreover, the continued
existence of a large group of Americans
without health insurance increases the
costs paid by those who have insurance as
uncovered expenses are shifted to other
purchasers. Efforts by Federal and State
governments to expand the number of
children who are insured are encouraging
and should be strengthened. Similar
efforts should be extended to other
segments of the population so that all
Americans are covered.
Consumers
faced with catastrophic illness require
assistance. Each year, an estimated
1,500 to 2,500 Americans lose their
private health insurance coverage because
their medical expenses exceed a lifetime
limit included in their health insurance
policy. Many of these consumers must
exhaust their family savings before
becoming eligible for Medicaid or other
forms of public assistance. This creates
a tremendous hardship on these
individuals and their families.
Employers, health plans, and others
should seriously consider taking steps to
ease this burden by (1) eliminating or
increasing lifetime limits, (2) expanding
the use of high-risk pools to provide
immediate coverage at the time consumers
reach a lifetime limit, or (3) offering
supplemental coverage for workers who
wish to increase their limits.
Coverage must be made affordable
for all consumers, employers, and other
purchasers. The recent moderation in
health care costs is promising and has
been a contributing factor in the slowing
of insurance coverage losses. Employers,
health plans, and Federal and State
governments should be applauded for their
efforts to make coverage more affordable
for more Americans. Recent projections
for 1998 are less favorable. History
makes clear that we cannot assume that
costs will remain under control without
continued cost containment.
Vulnerable groups require special
attention. Many consumers are, for
reasons beyond their control, more
vulnerable than others to losing their
coverage or experiencing significant gaps
in their coverage. Individuals with
mental or physical disabilities,
low-income individuals, children,
non-English-speaking consumers, and
others require considerable attention by
decisionmakers at all levels of the
system. Enactment of the Americans with
Disabilities Act of 1990, the Health
Insurance Portability and Accountability
Act of 1996, and the Mental Health Parity
Act of 1996 were important steps to
protect these consumers. Further steps
can and should be taken.
Small purchasers need assistance.
The owners of small businesses, the
self-employed, and those who purchase
insurance in the individual market
continue to have great difficulty finding
and maintaining affordable health care
coverage. For a variety of reasons,
insurance premiums are higher for small
firms relative to the benefits they are
able to purchase, and some small firms
are unable to purchase insurance at all.
In its final report, the Commission
intends to offer several recommendations
to help ameliorate some of these effects,
including voluntary approaches for
expanding insurance pools and for
adjusting payment systems to reflect the
greater risk inherent in small group and
individual markets.
Consumer participation in clinical
research. The national investment in
clinical research has led to breakthrough
advances in diagnosis, prevention, and
treatment of illness and disability that
have lengthened and improved the quality
of life for millions of consumers while
also achieving significant cost savings
to the health care industry. Consumer
participation in clinical research
through their inclusion in clinical
trials is vitally important not only to
continued advancement and innovation in
medical care but to the often
life-threatening nature of the conditions
affecting such consumers. The Commission
encourages the ongoing efforts by
researchers, health plans, employers,
public purchasers, and others to resolve
impediments to consumer participation in
clinical trials and urges participants to
reach agreement on an appropriate sharing
of costs and responsibilities related to
such trials.
The Commission does not, in this report, speak to the
issues of implementation or enforcement of the Consumer
Bill of Rights and Responsibilities. The rights
enumerated in this report can be achieved in several ways
including voluntary actions by health plans, purchasers,
facilities, and providers; the effects of market forces;
accreditation processes; as well as State or Federal
legislation or regulation. In its final report to the
President, the Commission intends to speak to the optimal
methods for implementing and enforcing these rights
through one or more of these approaches.
Finally, the Commission believes that the American
people should have access to health care that is of high
quality, evidence-based, safe, free of errors, and is
available to all Americans regardless of ability to pay.
Progress, over time, will require changes that must be
made prudently, realistically, and with due regard to the
needs of all stakeholders in the system. This Consumer
Bill of Rights and Responsibilities specifies
improvements that we believe are achievable now and in
the next several years. It acquires even more meaning in
the context of a broader overarching commitment to ensure
that full access to high-quality health care will
eventually be available to all Americans.
Statement of the Right Consumers
have the right to receive accurate, easily understood
information and some require assistance in making
informed health care decisions about their health plans,
professionals and facilities.
This information should include:
- Health plans:4 Covered
benefits, cost-sharing, and procedures for
resolving complaints; licensure, certification,
and accreditation status; comparable measures of
quality and consumer satisfaction; provider
network composition; the procedures that govern
access to specialists and emergency services; and
care management information.
- Health professionals: Education and board
certification and recertification; years of
practice; experience performing certain
procedures; and comparable measures of quality
and consumer satisfaction.
- Health care facilities: Experience in
performing certain procedures and services;
accreditation status; comparable measures of
quality and worker and consumer satisfaction;
procedures for resolving complaints; and
community benefits provided.
Consumer assistance programs must be carefully
structured to promote consumer confidence and to work
cooperatively with health plans, providers, payers, and
regulators. Sponsorship that assures accountability to
the interests of consumers and stable, adequate funding
are desirable characteristics of such programs.
Rationale
Value-based purchasing allows consumers to obtain
greater value for their health care dollar by seeking
higher quality care at the best price. To do this,
consumers need accurate, reliable information that will
allow them to assess differences in the quality and cost
of health benefits plans, the health care providers who
treat them, and the facilities and institutions that
house them. Active and informed decisionmaking by
consumers will improve the performance of the health care
system, as providers seek to enhance their quality and
reduce their costs in order to be more attractive to
value-seeking consumers.
A more basic reason for providing consumers with
information is an ethical one. Health plans, facilities,
and professionals have an ethical obligation to inform
consumers about how their actions can affect the
consumer's life and health. Medical ethicists ground this
obligation in the principle of respect for individual
autonomy and individuals' right to make choices about how
they receive medical care (Beauchamp and Childress,
1994).
This chapter provides a description of the types of
information on health plans, health professionals, and
health care facilities that should be made available to
consumers either routinely or upon request. The
Commission recognizes that much work remains to be done
if all this information is to be readily available and
understandable to consumers, specifically:
- Detailed explanation is needed for certain
types of information. Some types of
information are straightforward and require no
further definition (e.g., the names, board
certification status, and geographic location of
primary care providers in a plan's network).
Other types of information would benefit from the
development of more detailed explanation, such as
the care management information on clinical
protocols, practice guidelines, and
preauthorization and utilization review standards
and procedures.
- Standardized measures are needed for
comparative purposes. For the information
intended to support consumer decisions regarding
the choice of a health benefits plan, or choice
of an individual provider or facility,
standardized definitions will be needed to allow
for "apples to apples" comparisons.
- Ongoing development and promulgation of
standardized measurement sets and instruments are
needed for assessing satisfaction and quality.
The Commission believes that some of the most
important types of information a consumer has a
right to receive fall into the categories of
consumer satisfaction ratings and clinical
quality performance measures for health plans,
health care professionals, and facilities. For
all consumers to exercise this right, processes
must be put in place to create standardized
performance measures. In its final report, the
Commission intends to address how such a process
might be established so as to build on existing
efforts, encourage ongoing innovation in quality
measurement, and provide the best possible
information to consumers at any given time to
encourage quality improvement through
market-based decisions.
- Useful and appropriate reporting formats and
processes are needed for consumers. Although
the Commission believes that consumers should
have access to pertinent information, it
recognizes that caution must be taken to provide
information to consumers in useful formats (e.g.,
summary and detailed reports, printed copy, and
Internet), at appropriate times (i.e., decision
points), with assistance for vulnerable groups
(i.e., those who are hearing impaired or
non-English speaking). These issues also will be
addressed in the Commission's final report.
Consumers should be able to obtain other information
upon request as outlined below. Plans, providers, and
facilities should inform consumers that such information
is available and describe how it can be obtained.
Health Plan Information
Many consumers face a choice of health plans such as
an indemnity plan, an HMO, a point-of-service plan, or a
preferred provider organization. Consumers' choice of a
health plan has a significant impact on consumers'
ability to make other choices about facilities, health
professionals, and treatment options. Even in cases where
consumers do not have a choice of plans, they require
information on the plan in which they are enrolled to use
the available services effectively.
To the extent that a right to information creates
disclosure requirements for health plans, these
requirements should apply equally to all types of plans
(including indemnity, HMO, PPO, and POS) regardless of
sponsor (e.g., such government programs as CHAMPUS, VA,
FEHBP, Medicare, and Medicaid and private plans including
fully funded, partially self-funded, or fully self-funded
plans). If the specific information required for
disclosure does not exist, or is unavailable, the
consumer should be informed.
The primary responsibility of providing consumers with
health plan information falls upon the plans themselves.
In the case of self-insured plans, this responsibility
will rest with the plan sponsor unless it is delegated or
contracted to a third-party administrator.
Within the category of health plan information, one
can discern four principal subcategories of information:
(1) benefits, cost-sharing, and dispute resolution; (2)
health plan characteristics and performance information;
(3) network characteristics; and (4) care management
information.
- Benefits, Cost-Sharing, and Dispute
Resolution. Consumers should receive the
following information about a health benefits
plan:
- A general summary of all covered
benefits, including:
- General limits on coverage,
including any annual or lifetime
limits, as well as limits for
specific conditions.
- Whether preventative services are
covered.
- Whether a drug formulary is used
and, if so, how decisions are
made pertaining to inclusion of
drugs, particularly new drugs
(including a process to consider
exceptions).
- How drugs, devices, and
procedures are deemed
experimental.
- Enrollee cost-sharing, including employee
or beneficiary premium contributions,
deductibles, copayments, and coinsurance.
- Type and extent of dispute resolution
procedures available in the event of a
dispute.
- Health Plan Characteristics and Performance
Information. Consumers joining or considering
whether or not to join a health plan should
receive information about:
- State licensure status, Federal
certification, and private accreditation
status (including publicly available
reports).
- Consumer satisfaction measures.
- Clinical quality performance measures.
- Service performance measures (e.g.,
waiting time to obtain an appointment
with primary care providers and
specialists).
- Disenrollment rates (adjusted for
involuntary disenrollment and other
relevant factors).
Additional information that should be made
available upon request includes:
- Number of years in existence.
- Corporate form of the plan (i.e., public
or private; gateway.html or for-profit
ownership and management).
- Whether the plan meets requirements
(State and Federal) for fiscal solvency.
- Whether the plan meets standards (State,
Federal, and private accreditation) that
assure confidentiality of medical records
and orderly transfer to caregivers.
- Network Characteristics. It is important
to provide consumers with information about the
characteristics of the network and the procedures
that govern its use. Consumers should receive:
- Aggregate information on the numbers,
types, board certification status, and
geographic distribution of primary care
providers and specialists.
- Detailed list of names, board
certification status, and geographic
location of all contracting primary care
providers; whether they are accepting new
patients; language(s) spoken and
availability of interpreter services; and
whether facilities are accessible to
people with disabilities.
- Provider compensation methods, including
base payment (e.g., capitation, salary,
fee schedule) and additional financial
incentives (e.g., bonus, withholds,
etc.).
- Rules regarding coverage of
out-of-network services, and applicable
rates of cost-sharing.
- Information about circumstances under
which primary care referral is required
to access specialty care.
- Information about what options exist for
24-hour coverage and whether enrollees
have access to urgent care centers.
Additional information that should be made
available upon request includes:
- Detailed list of names, board
certification status, and geographic
location of all contracting specialists
and specialty care centers; whether they
are accepting new patients; language(s)
spoken and availability of interpreter
services; and whether facilities are
accessible to people with disabilities.
- Detailed list of names, accreditation
status, and geographic location of
hospitals, home health agencies,
rehabilitation and long-term care
facilities; whether they are accepting
new patients; language(s) spoken and
availability of interpreter services; and
whether they are accessible to people
with disabilities.
- Care Management Information. Information
in this category that should be available upon
request includes:
- Preauthorization and utilization review
procedures followed.
- Use of clinical protocols, practice
guidelines, and utilization review
standards pertinent to a patient's
clinical circumstances.
- Whether the plan has special disease
management programs or programs for
persons with disabilities. (This
information should indicate whether these
programs are voluntary or mandatory or if
a significant benefit differential
results.)
- Whether a specific prescription drug is
included in a formulary and procedures
for considering requests for
patient-specific waivers.
- Qualifications of reviewers at the
primary and appeals levels.
Health Professional Information
All consumers should receive information on:
- Whether the health professional's ownership or
affiliation arrangement with a provider group or
institution would make it more likely that a
consumer would be referred to particular
specialists or facility or receive a particular
service.
- How the provider is compensated, including base
payment method (e.g., capitation, salary, fee
schedule) and types of additional financial
incentives (e.g., bonus, withholds).
Consumers should receive upon request the
following information on health professionals:
- Education, board certification, and
recertification status.
- Names of hospitals where physicians have
admitting privileges.
- Years of practice as a physician and as a
specialist if so identified.
- Experience with performing certain medical or
surgical procedures (e.g., volume of
care/services delivered), adjusted for case mix
and severity.
- Consumer satisfaction measures.
- Clinical quality performance measures.
- Service performance measures.
- Accreditation status (if applicable).
- Corporate form of the practice (i.e., public or
private, gateway.html or for-profit, ownership
and management, sole proprietorship or group
practice).
- The availability of translation or interpretation
services for non-English speakers and people with
communication disabilities.
- Any cancellation, suspension, or exclusion from
participation in Federal programs or sanctions
from Federal agencies; any suspension or
revocation of medical licensure, Federal
controlled substance license, or hospital
privileges.
Health Care Facility Information
Consumers should receive the following information
from a health care facility:
- Corporate form of the facility (i.e., public or
private; gateway.html or for-profit; ownership
and management; affiliation with other corporate
entities).
- Accreditation status.
- Whether specialty programs meet guidelines
established by specialty societies or other
appropriate bodies (e.g., whether a cancer
treatment center has been approved by the
American College of Surgeons, the Association of
Community Cancer Centers, or the National Cancer
Institute).
- The volume of certain procedures performed at
each facility.
- Consumer satisfaction measures.
- Clinical quality performance measures.
- Service performance measures.
- Procedures for registering a complaint and
achieving resolution of that complaint.
- The availability of translation or interpretation
services for non-English speakers and people with
communication disabilities.
- Numbers and credentials of providers of direct
patient care (e.g., registered nurses, other
licensed providers, and other caregivers).
- Whether the facility's affiliation with a
provider network would make it more likely that a
consumer would be referred to health
professionals or other organizations in that
network.
- Whether the facility has been excluded from any
Federal health programs (i.e., Medicare or
Medicaid).
Consumer Assistance Programs
Initial results indicate that consumer assistance
programs support consumer needs for information on health
plans, providers, and facilities. A loose patchwork of
consumer assistance services currently exists in the
public and private sectors. In the public sector, 14
State or locally based Medicaid programs now have
established ombudsmen programs to assist beneficiaries
with information needs. Some Medicare beneficiaries and
people with chronic health problems have access to
consumer assistance services through Information,
Counseling, and Assistance (ICA) programs, long-term care
ombudsmen programs, and protection and advocacy programs.
In the private sector, health plans often provide
consumers with assistance services through customer and
member service departments (Oxford Health Plans, 1997;
Harvard Pilgrim Health Plan, 1997). Large group
purchasers and labor unions often provide their employees
with consumer assistance by organizing information on
plans, educating employees about their rights, and
intervening when employees have complaints about their
plans (Darling, 1997).
While there are a number of sources that provide
assistance to consumers, most programs target specific
subpopulations and have limited funds, and hence provide
a limited range of services. There are reasons to believe
that consumers and other stakeholders would benefit from
greater availability of consumer assistance programs
that:
- Inspire confidence. Consumers want to know
that they will be treated fairly.
- Provide a safety valve. Even in the best
of systems, there will be individuals who fall
through the cracks. Assistance programs provide a
resource that can help such individuals resolve
problems quickly and efficiently, often bridging
communication failures between the consumer and
the provider or health plan.
- Foster collaboration. Assistance programs
should work with the array of available resources
to best meet the needs of consumers.
The challenge to crafting assistance programs for
health care consumers is to ensure that such programs are
not duplicative, but rather that they supplement and
complement existing resources.
With regard to consumer assistance, the Commission has
not addressed issues of implementation. Specifically,
this is not an endorsement or a requirement for any
particular form of consumer assistance programs, but lays
out desirable characteristics of such programs.
Implications of the Right
Obtaining the information listed above and making it
available to consumers will not, by itself, equip
consumers with the knowledge and abilities required to
act on this information. Discussed below are some basic
considerations in making this information useful to
consumers and the implications of this for key segments
of the health care industry.
- Information Should Be Useful to Consumers and
Cost Effective to Obtain. Edgman-Levitan and
Cleary (1996) have documented that consumers are
able to evalute critical information about
quality. However, research on how consumers use
information to make decisions suggests that too
much information can be overwhelming. In its 1988
assessment of methods for commmunicating the
quality of medical care to consumers, the Office
of Technology Assessment's Expert Advisory Panel
concluded that "limiting information to only
a few indicators of quality will probably be
necessary [because] people can consider only a
few items at any one time. Information is
processed as a unit or chunk -- a person's
processing capacity has been estimated as being
anywhere from four to seven chunks" (OTA,
1988). Ongoing research must be conducted to
determine what is the most effective subset of
information that consumers can use. Finally,
while consumers clearly have a right to
information, it must be understood that there are
costs associated with collecting and distributing
it. While providing information to consumers
generates significant benefits for both the
consumers and the health system as a whole, it is
not necessarily inexpensive. Recognizing these
costs, however, is not an argument for a
"bare bones" approach to information
disclosure. The failure to provide information
also has costs. Well-informed consumers are the
bedrock of an efficiently operating market.
Without meaningful information, consumers are
more likely to make choices that can result in
less than optimal outcomes for themselves and
there is less incentive for participants to
strive for excellence. The challenge is to
develop coordinated approaches to information
collection and dissemination that will provide
consumers the information they need to make
decisions without imposing severe burdens on
plans and providers.
Investments in
Clinical Information Systems and Workforce
Education and Training Will Be Needed.
Greater investment in automated information
systems will be necessary for health plans and
providers to satisfy these information disclosure
requirements, especially ones pertaining to
product, facility, and provider performance and
quality. The Commission is currently assessing
barriers or impediments to investment in clinical
information systems (e.g., inadequate data
collection standards; confidentiality concerns;
magnitude of capital investments required) and
plans to speak to this issue in its final report.
Responding to these increased information demands
also has implications for the training and
education of the health care workforce. There
will be greater demand by health care
organizations for individuals with particular
technical and analytic skills (e.g., computer
programming, engineering, data auditing, and
statistics). Ongoing training and continuing
education programs for practitioners and other
workers whose work involves recording, compiling,
or manipulating clinical and administrative data
will also be needed to assure the completeness
and accuracy of data and adherence to
confidentiality safeguards.
References and Selected Reading
Beauchamp TL, Childress JF. Principles of
Biomedical Ethics (New York): Oxford University
Press; 1994.
Darling H. Xerox Corporation. testimony before the
Advisory Commission on Consumer Protection and Quality in
the Health Care Industry, May, 1997.
Edgman-Levitan S, Cleary S and P. "What
Information Do Consumers Want and Need: What Do We Know
About How They Judge Quality and Accountability?"
in: Jones SB, Lewin ME, editors, Improving the
Medicare Market: Adding Choice and Protections,
Washington, DC: National Academy Press; 1996.
Harvard Pilgrim Health Care. telephone conversation
with Janice Boyce, Public Affairs Department, August 25,
1997.
Office of Technology Assessment. The Quality of
Medical Care: Information for Consumers, No.
OTA-H-386. Washington, DC; 1988.
Oxford Health Plans. telephone conversation with Scott
Schwartz, Assistant General Counsel, August 25, 1997.
Sofaer S. "How Will We Know If We Got It Right?
Aims, Benefits and Risks of Consumer Information
Initiatives," The Joint Commission Journal on
Quality Improvement, May 1997; 23(5):258-264.
Statement of the Right Consumers
have the right to a choice of health care providers that
is sufficient to ensure access to appropriate
high-quality health care.
To ensure such choice, health plans
should provide the following:
Public and private group purchasers
should, wherever feasible, offer consumers a choice of
high-quality health insurance products. Small employers
should be provided with greater assistance in offering
their workers and their families a choice of health plans
and products.
The ability of consumers to exercise
choice in the health care marketplace is associated with
several desirable characteristics of a health care
system.
- First, choice is associated with
increased consumer satisfaction. In a survey of
consumers receiving health care in both indemnity
and managed care plans, individuals with a choice
of health products report greater satisfaction
with their plan and tend to rate both their
health insurance product and their individual
physicians of higher quality (Davis and Schoen,
1997).
- Second, the ability of consumers
to choose among competing products is a hallmark
of a healthy marketplace. Individual consumers
are responsible for 34 percent of all direct
expenditures for health care in the United States
(Cowan et al., 1996). As the science of measuring
and generating accurate and valid information on
the quality of health plans, providers and
facilities advances, consumers can wield their
purchasing power to create incentives in the
marketplace for improvements in health care
quality.
- Third, consumers who have a role
in the selection of their caregivers are likely
to have greater confidence in those practitioners
and are, therefore, more likely to seek
appropriate care in a more timely fashion and
follow agreed-upon care regimens.
- Fourth, having a choice of
providers allows consumers to take action to
preserve continuity of care within the health
care system by selecting products and providers
that allow them to continue provider
relationships when continuity of care is
especially important (e.g., prenatal care, care
of individuals with complex chronic or disabling
conditions).
Thus, a health care marketplace that
promotes satisfied consumers, continuity of care, and
continuous improvements in quality requires that an array
of choices be available to consumers. Without consumers'
ability to have and exercise choice, greater activities
may need to be undertaken by group purchasers and
regulators to ensure that the health care marketplace
responds appropriately to consumers' health care needs.
During the last decade, there has been
a marked increase in the number and types of health
insurance products available in most geographic markets.
Prior to the widespread development of managed care
plans, most Americans had limited choice of health
insurance products. Indemnity products dominated the
market with HMO and PPO products available primarily in
certain metropolitan areas. The past 10 years have seen a
significant increase of insurance products with the
expansion of many health plans into new geographic
markets and the development of multiple insurance product
lines by indemnity insurers and managed care
organizations. As a result, with the exception of
sparsely populated areas, most communities now have
available HMO, POS, PPO, and indemnity products offering
consumers a variety of options in terms of benefits,
premiums, copayments, and health care delivery systems.
At the same time, there has been a
steady migration from traditional indemnity plans to
various managed care products in both the public and
private markets. Between 1991 and 1995, the percentage of
American workers enrolled in indemnity plans decreased
from 59 percent to 35 percent (EBRI, 1997). In 1997, more
than 5 million Medicare beneficiaries were enrolled in
336 managed care plans, an increase of more than 100
percent since 1993. Under Medicaid, 13 million, or 35
percent, of all beneficiaries have been enrolled in
managed care plans, an increase of more than 170 percent
since 1993. The Balanced Budget Act of 1997 will increase
those trends by expanding the types of products available
to beneficiaries of those two public programs.
Although there is greater choice of
health insurance products available in most markets, it
is important to note that this choice often is exercised
at the level of the group purchaser instead of by
individual consumers. Between 1988 and 1997, health plan
offerings by moderate- and large-sized employers declined
(Gabel, 1997). Those offering three or more plans
declined from 35 percent to 32 percent, while those
offering only one plan climbed from 41 percent to 44
percent over that period. Notably, the percentage of
employees in firms with 200 or more workers who were
offered coverage of PPOs and POS plans increased from 12
percent in 1988 to 58 percent in 1997 (Gabel, 1997).
There also is evidence of variation in
consumer preferences for various product characteristics.
In the Kaiser-AHCPR survey (1996), 70 percent of survey
respondents would prefer a high-cost product with a wide
range of benefits over a low-cost product with a more
limited range of benefits (26 percent). Respondents were
more divided over other health product decisions.
Fifty-three percent said they would pay more for
unrestricted choice of physicians, while 43 percent would
opt for a lower-cost product that limited choice to a
list of physicians. Forty-six percent would pay more to
have direct access to any specialist, whereas more than
half (51 percent) would choose a lower-cost plan that
requires a visit to the family physician for a referral
(Robinson and Brodie, 1997).
The Commission is troubled by the
limited choice of insurance products made available to
many consumers through their employer group purchasers.
Some of the reduction in choice of plan and product has
resulted from conscious decisions by employers to select
high-quality products at the best price in the market. In
other instances, employers may be seeking to minimize
administrative costs associated with multiple offerings.
Affording consumers greater choice of plans would allow
consumers to select the product that best meets their
individual preferences and would encourage health plans
to be responsive to consumers' expressed needs. However,
the Commission recognizes that, for many consumers, the
availability of one plan is better than no plan at all.
The Commission was unable to achieve
consensus on creating a "right" to a consumer
choice of health plan or product but it is determined to
find ways to encourage and assist employers and other
group purchasers in providing consumers with a meaningful
choice of health plans and products. Consumer choice of
health plans is important and should be provided whenever
possible and in a way that is affordable both to
employers and consumers. In its final report, the
Commission will address policy options to provide greater
choice of health plans and products, including
encouraging the development of purchasing coalitions and
alliances to assist small employers who encounter the
greatest difficulty in offering multiple options.
The shift from indemnity coverage to
managed care arrangements can affect consumers' choice of
physicians and other health care providers. In a 1995
study, 41 percent of managed care enrollees who changed
health plans over the prior 3 years also changed
physicians (Davis et al., 1995). However, nearly all
covered workers can now choose a health plan that covers
non-network providers. In some cases, however, the
additional cost of these products or of the option to go
out of network effectively puts such choice out of the
reach of some consumers.
It also is clear that consumers value
some degree of choice of physicians. The 1997
Kaiser/Commonwealth National Health Insurance Survey
found that respondents with a choice of physicians
registered the highest level of satisfaction with their
plans (Davis and Schoen, 1997). A Kaiser-AHCPR survey of
consumers identified four reasons why consumers prefer a
greater choice of physicians and other health care
professionals:
The most frequently cited reasons
speak to consumers' desire to use choice of physicians as
a way to obtain quality care. The third is directed
toward maintaining relationships with physicians with
whom consumers have an existing relationship. In other
words, 63 percent of consumers surveyed wanted a choice
of physicians so that they can develop and maintain a
relationship with a physician they trust to provide them
high-quality care.
Therefore, it is important for all
health plans and products to maintain an adequate network
of physicians and other health care providers, to provide
for continuity of care when consumers change plans, and
to allow consumers with special health care needs to have
adequate choice of physicians and other health care
providers. This can lead to higher consumer satisfaction
with providers and their health plans without undermining
the efforts of provider groups and health plans to
develop organized delivery systems.
The Commission's recommendations seek
to build on these trends toward providing greater choice
by taking several steps to ensure (1) network adequacy;
(2) greater access for women to qualified specialists for
women's health services; (3) ease of access to
specialists for consumers with complex and serious
conditions; and (4) greater continuity of care for
consumers who enroll in new health plans or see their
provider dropped from a plan for other than cause.
When appropriately structured, a plan
using a network of providers can improve the quality and
coordination of care delivered to consumers through
careful selection and credentialing of providers and
through coordination of care by primary care physicians
and those with specialty training. The National
Association of Insurance Commissioners (NAIC, 1996) has
developed standards for provider network adequacy that
have been adopted by several States. The Commission
believes universal adoption of these standards will
improve both the quality of care and consumers'
satisfaction with their health plans and their care.
Because of its strong desire to maintain the integrity of
health plan networks, the Commission has rejected
approaches to mandate the inclusion of providers into
networks (i.e., "any willing provider" laws) or
to require plans to allow enrollees to go out of plan
networks at will (i.e., "freedom of choice"
laws).
Consumers with ongoing health needs
often require regular access to physicians and other
health care professionals who are specially trained to
serve those needs (Bernstein, Dial, and Smith, 1995).
This is especially true of those consumers who have
disabling or terminal conditions. In such cases, the
traditional "gatekeeper" approach used by some
health plans can be an impediment to access to quality
care and result in unnecessary inconvenience to
consumers. The Commission's recommendations are designed
to promote consumers' access to appropriately trained
specialists while maintaining the integrity of network
models of care. Consumers with complex and serious
medical conditions who require frequent specialty care
should have direct access to a qualified specialist of
their choice within a plan's network of providers.
Authorizations, when required, should be for an adequate
number of direct access visits under an approved
treatment plan.
Morbidity and mortality associated
with breast cancer, cervical cancer, ovarian cancer, and
sexually transmitted diseases in women can be
significantly reduced through the provision of preventive
and routine gynecological services. The U.S. Preventive
Services Task Force has issued recommendations pertaining
to the provision of Pap smears, mammograms, and other
preventive services for women. Women should be able to
choose a qualified provider offered by a plan --
including gynecologists, certified nurse midwives, and
other qualified health care providers offered by a plan
-- for the provision of routine and preventive women's
health care services.
Finally, consumers who are undergoing
an extensive course of treatment (e.g., chemotherapy or
prenatal care) at the time they join a new health plan
should be able to continue to see their current providers
for a period of up to 90 days (or through completion of
postpartum care). Similarly, such consumers should be
able to continue to see a provider who is terminated from
a plan's network for reasons other than cause. Sudden
interruption of care can compromise the quality of care
and patient outcomes. Continuity of care has been shown
to increase the likelihood that patients receive
appropriate preventive services (O'Malley et al., 1997).
Appropriately transitioning of care can protect the
quality of that care and improve consumers' satisfaction
with a new health plan or product. The Commission's
recommendations are designed to ease the impact of these
transitions from one health insurance product to another
and changes in the composition of health plan networks
while maintaining the integrity of network models of
care. Consumers who are undergoing a course of treatment
for a chronic or disabling condition (or who are in the
second or third trimester of a pregnancy) at the time
they involuntarily change health plans or at a time when
a provider is terminated by a plan for other than cause
should be able to continue seeing their current specialty
providers for up to 90 days (or through completion of
postpartum care) to allow for transition of care.
Bernstein AB, Dial TH, Smith MD.
"Women's Reproductive Health Services in Health
Maintenance Organizations." West J. Med 1995;
163[suppl]:15-18.
Cowan, CA, Braden, BR, McDonnell, PA,
et al. "Business, Households and Government: Health
Spending, 1994." Health Care Finance Rev;
Summer 1996; 17(4):157-178.
Davis K, Collins KS, Schoen C, et al.
"Choice Matters: Enrollees' Views of Their Health
Plans." Health Affairs; Summer 1995; 99-112.
Davis K, Schoen C. testimony before
the Advisory Commission on Consumer Protection and
Quality in the Health Care Industry; June 25, 1997.
Employee Benefits Research Institute. EBRI
Databook on Employee Benefits, Washington DC, 1997.
Gabel JR (KPMG Peat Marwick LLP).
testimony before the Advisory Commission on Consumer
Protection and Quality in the Health Care Industry; June
23, 1997.
Kaiser Family Foundation and the
Agency for Health Care Policy and Research (AHCPR). Americans
as Health Care Consumers: The Role of Quality
Information. Princeton Survey Research Associates;
October 1996.
KPMG Peat Marwick, Health Insurance
Association of America. Sourcebook of Health Insurance
Data. Washington, DC; 1996.
O'Malley AS, Mandelblatt J, Gold K,
Cagney KA, Kerner J. "Continuity of Care and the Use
of Breast and Cervical Cancer Screening Services in a
Multiethnic Community." Arch Intern Med 1997;
157(13):1462-70.
National Association of Insurance
Commissioners. Managed Care Plan Network Adequacy
Model Act. Model Regulation Service; October 1996.
Robinson S, Brodie M.
"Understanding the Quality Challenge for Health
Consumers: The Kaiser/AHCPR Survey." Journal on
Quality Improvement, May 1997; 23(5):239-244.
Statement of the Right Consumers
have the right to access emergency health care services
when and where the need arises. Health plans should
provide payment when a consumer presents to an emergency
department with acute symptoms of sufficient severity --
including severe pain -- such that a "prudent
layperson" could reasonably expect the absence of
medical attention to result in placing that consumer's
health in serious jeopardy, serious impairment to bodily
functions, or serious dysfunction of any bodily organ or
part.
To ensure this right:
In 1995, Americans paid an estimated
96.5 million visits to emergency departments, nearly 37
visits per 100 persons (Stussman, 1997). By tradition,
emergency departments (EDs) have handled a spectrum of
illness, but have had the primary mission of treating
those with acutely serious, even life-threatening,
medical conditions. Emergency services can be defined as
services that are needed or appear to be needed
immediately because of injury or sudden illness that
threatens serious impairment of any bodily function,
and/or serious dysfunction of any bodily organ or part.
Patients go to the emergency
department with nonurgent problems for various reasons.
Economic and geographic barriers to other forms of care,
the lack of a regular provider, and other factors can and
do prompt patients to turn to the emergency department
for primary and other nonurgent care. Apart from lack of
health insurance coverage, nonfinancial barriers to
primary care encourage patients to seek evaluation and
treatment in the ED. These include problems with work
schedules, access to transportation, and concerns about
personal safety (Rask, Williams, Parker, et al., 1994).
Physician offices and primary care clinics often have
limited hours of operation, while EDs are open 24 hours a
day. Medicaid beneficiaries, who have a history of
limited access to regular providers, have particularly
strong relationships with EDs as the provider of first
and last resort. Nonurgent visits to the ED can be
costly, contribute to overcrowded waiting rooms, divert
resources away from other hospital-based care, and
compromise the coordination and continuity of care.
But drawing the line between urgent
and nonurgent use of the ED is not an easy decision for
providers, health plans, and consumers. Criteria -- both
prospective and retrospective -- for appropriate ED use
are in many ways inadequate. By one criterion, a
patient's ED visit might be deemed appropriate, and by
another, not so (Lowe and Bindman, 1997). Health care
professionals do not agree among themselves about the
need for urgent care among emergency department patients
(Gill, Reese, and Diamond, 1996). In a survey of 56
hospital EDs, 5.5 percent of patients initially
classified by triage nurses as nonurgent were later
admitted to the hospital from the ED (Young, Wagner,
Kellerman, et al., 1996). Studies estimate that those
presenting with nonurgent problems to the ED range from
6.3 percent (Cunningham, Clancy, and Cohen, et al., 1995)
to 54.2 percent (Stussman, 1997) of ED visits.
To better manage care and costs in the
ED setting, indemnity and managed care plans use a range
of tools that includes requirements for prior
authorization and imposition of higher cost-sharing for
use of out-of-network emergency departments. A 1989
survey of HMO medical directors found coverage policies
for ED use across the HMO industry to be fairly uniform
(Kerr, 1989). Unless the condition is life-threatening,
patients must obtain prior authorization before seeking
emergency care services in 80 percent of the responding
HMOs, and 38 percent limited their coverage to the EDs of
selected network hospitals. A study undertaken by the
Center for Health Policy Studies shows that private
indemnity insurers have adopted many of these same
practices in their fee-for-service arrangements (PPRC,
1996).
A growing set of State and Federal
laws and regulations clarify and protect consumers'
access to appropriate emergency services. The Emergency
Medical Treatment and Labor Act (EMTALA) requires all
Medicare participating hospitals to evaluate whether a
patient has an emergency medical condition and, if so, to
stabilize the patient. The Balanced Budget Act of 1997
requires health plans participating in Medicare or
Medicaid to reimburse for emergency services using a
"prudent layperson" standard. Numerous States
also have adopted this standard for access to emergency
services. The Commission's recommendation seeks to create
uniformity in all States.
Cunningham PJ, Clancy CM, Cohen WJ.
"The Use of Hospital Emergency Departments for
Nonurgent Health Problems: A National Perspective." Med
Care Res Rev 1995; 52(4):453-474.
Gill JM, Reese CL, Diamond JJ.
"Disagreement among Health Care Professionals about
the Urgent Care Needs of Emergency Department
Patients." Ann Emerg Med 1996; 28(5):474-479.
Kerr HD. "Access to Emergency
Departments: A Survey of HMO Policies." Ann Emerg
Med 1989; 18(3):274-277.
Lowe RA, Bindman AB. "Judging Who
Needs Emergency Department Care: A Prerequisite for
Policy-Making." Am J Emerg Med 1997;
15(2):133-136.
Physician Payment Review Commission. Managing
Medicare's Fee-for-Service Program. 1996 Annual Report to
Congress. Washington, DC: PPRC; 1996; 196-199.
Rask KJ, Williams MV, Parker RM, et
al. "Obstacles Predicting Lack of a Regular Provider
and Delays in Seeking Care for Patients at an Urban
Public Hospital." JAMA 1994; 271:1931-1933.
Stussman BJ. National Hospital
Ambulatory Medical Care Survey: 1995 Emergency Department
Survey. Advance Data from Vital and Health Statistics
(no. 285). Hyattsville, MD: National Center for Health
Statistics; 1997.
Young GP, Wagner MB, Kellermann AL, et
al. "Ambulatory Visits to Hospital Emergency
Departments: Patterns and Reasons for Use." JAMA
1996; 276:460-465.
Statement of the Right Consumers
have the right and responsibility to fully participate in
all decisions related to their health care. Consumers who
are unable to fully participate in treatment decisions
have the right to be represented by parents, guardians,
family members, or other conservators.
In order to ensure consumers' right
and ability to participate in treatment decisions, health
care professionals should:
To facilitate greater communication
between patients and providers, health care providers,
facilities, and plans should:
Consumers depend on health care
professionals to provide them with expert consultation
and advice on how to stay healthy or how to cure or
palliate their health and medical problems. Unlike many
other consumer transactions, the asymmetry of information
between consumer and health care provider often is great.
Decisionmaking also often occurs at a time of illness,
which can undermine the patient's ability to act most
effectively in his or her own interest.
Relationships between consumers and
health care professionals are most rewarding and likely
to result in positive outcomes when they are
characterized by open communication and active
participation of patients in the treatment process.
Patient participation in treatment is an essential part
of compliance, and compliance improves the effectiveness
of care and treatment.
The benefits of patient participation
go beyond just the anticipated therapeutic effect of the
intervention (Czajkowski and Chesney, 1990). For example,
the Coronary Drug Project Research Group (1980), which
studied the efficacy and safety of several lipid-lowering
drugs, found that even among patients who only took
placebos, good adherers had a much lower 5-year mortality
rate (15 percent) than did poor adherers (24.6 percent).
Patient participation in treatment
decision making also leads to improved satisfaction with
care and better quality of life. For example, in a study
of patients with early breast cancer, it was found that
those who believed they were more responsible for
treatment decisions and had more choice of treatment
reported higher quality of life than those who perceived
themselves as less in control of the treatment decisions
(Street and Voigt, 1997).
To participate in decisionmaking about
their care, consumers must have complete information
about treatment options -- including the alternative of
no intervention -- as well as the risks, benefits, and
consequences of such options. Yet evidence suggests that
clinical practice often falls short of these
expectations. A 1988 study of hospitalized patients found
that physicians discussed test or treatment rationale in
only 43 percent of cases and alternatives in 12 percent
of cases (Wu and Pearlman, 1988). Physicians shared with
patients information about benefits in 34 percent of
cases and risks in 14 percent of cases.
The continued development of
communications technologies to help consumers more fully
understand their treatment options and to evaluate the
potential risks and benefits of treatments should be
encouraged, for example, the use of videos to help men
with prostate cancer evaluate the risks and benefits of
surgery versus a "watchful waiting" strategy
(Wennberg, 1995) and to help men with benign prostatic
hypertrophy sort out options for treatment (Wagner et
al., 1995).
Increasingly, effective communication
between providers and patients demands some degree of
cultural competence. By the year 2000, nearly one-quarter
of the U.S. population will be members of racial or
ethnic "minority" groups; this will grow to
47.5 percent by the middle of the next century. Cultural
competence refers to the "demonstrated awareness and
integration of three population-specific issues:
health-related beliefs and cultural values, disease
incidence and prevalence, and treatment efficacy"
(Lavizzo-Mourey and Mackenzie, 1996). Effective
communication for people with communication disabilities
may require health care providers to provide auxiliary
aids and services and remove certain communication
barriers.
It also is imperative that providers
be aware of and comply with their patients' decisions
with respect to advance directives. Once a patient makes
a decision, the health care team should respect this
treatment choice. Yet there is clear evidence that this
is not happening in far too many instances. Teno et al.
(1995) studied 4,301 patients hospitalized in 6 hospitals
and found that physicians often were unaware of their
patients' wishes. In 47 percent of cases, physicians
reported that they did not know of their patients'
expressed desire for a "do not resuscitate"
order. In another study focusing on nursing home
residents transferred to hospitals, Davis, Southerland,
Garrett, et al. (1991) found that medical treatment was
consistent with advance directives in 75 percent of the
96 cases studied.
There are a variety of organizational
and contractual factors that also may influence
communication between patients and providers. These
include financial arrangements and contractual
restrictions or sanctions that may inhibit the free
exchange of information.
Much attention has focused in recent
years on the potential effects of providers' financial
incentives on treatment. Methods of compensating
physicians can be a powerful mechanism to change provider
practice, either to improve the quality of care provided
to consumers or to reduce the costs of that care. But
poorly designed compensation arrangements also can result
in inappropriate use (including both overuse and
underuse) and barriers to care.
All methods of compensating physicians
and other health care providers create some form of
incentive for behavior. Various approaches are used to
offset the potential adverse effects of compensation
arrangements. For example, fee-for-service systems may
use utilization review mechanisms to temper incentives
toward overutilization of health care services.
Capitation systems may incorporate measures of quality
and consumer satisfaction to minimize incentives toward
overutilization. Similarly, salaried arrangements may use
bonuses to encourage higher provider productivity and
exemplary performance.
In 1996, the Health Care Financing
Administration promulgated rules concerning the use of
certain types of financial arrangements on behalf of
health plans serving Medicare or Medicaid beneficiaries.
These rules stipulate that compensation arrangements
"may not include any direct or indirect payments to
physicians or groups as an inducement to limit or reduce
necessary services furnished to an individual enrollee
who is covered under the managed care organization's
contract." These regulations also require disclosure
of information about arrangements that transfer
substantial financial risk to the health care provider.
If the compensation methods used places the physician or
physician group at substantial financial risk, then the
health plan must survey enrollees about access and
satisfaction with the quality of services, and institute
adequate and appropriate stop-loss protections.
In addition to financial incentives,
contract rules that restrict providers' ability to advise
patients about medically necessary treatment options have
been the subject of much concern. Health care providers
must be able to advocate for their patients without
constraint or fear of reprisal. A report by the General
Accounting Office (GAO, 1997) reported: "Of the 529
HMOs in our study, none used contract clauses that
specifically restricted physicians from discussing all
appropriate medical options with their patients.
Two-thirds of responding plans and 60 percent of the
contracts submitted had a nondisparagement,
nonsolicitation, or confidentiality clause that some
physicians might interpret as limiting communication
about all treatment options. However, contracts with such
business clauses often contained anti-gag language
stating that the physician should not misconstrue the
contract of a specific provision as restricting medical
advice to patients or that the physician should foster
open communication." As of mid-1997, 25 States had
prohibited the use of such clauses in managed care
contracts with physicians and legislation was pending in
23 other States (Health Policy Tracking Service, 1997).
In December 1996, HCFA banned the use of gag rules under
the Medicare program and in February 1997, HCFA took
similar action regarding health plans' participating in
Medicaid.
- Consumers must take a more
active part in the treatment decision process.
Information can be empowering, but navigating the
health care system requires patient effort, from
completing advance directives to preparing
questions for an office visit. This requires that
the consumer ask questions, understand and give
informed consent, and become a full partner in
treatment decisions with his or her health care
provider.
Health care
providers also have the central role in
ensuring the patient's participation in treatment
decisions, including compliance with informed
consent. They will need to improve their skills
in providing information about the medical and
scientific evidence underlying different
treatment options to patients and their families;
strive to overcome cultural and language and
communication barriers; and keep abreast of the
latest and best available treatment options. At
the same time, they will need to do a better job
of listening to their patients and following
their decisions, including the decision to forgo
treatment or certain types of treatment. Health
care providers should assume this responsibility
well before a patient reaches a hospital door. To
hold the trust of patients, providers will need
to disclose financial incentives that may
introduce bias into treatment decisionmaking and
to avoid such incentives when the balance is
tipped against the patient. To be above any
potential bias, providers must avoid
self-referral arrangements that can cloud their
professional judgment. And, finally, health care
providers are and should be the most effective
advocates for their patients' rights.
Health care facilities and
plans must create and maintain an environment
supportive of consumer participation in treatment
decisions. In the office practice, this means
ensuring adequate visit time for patients and
providing support for shared decisionmaking
programs when questions about care linger, arise
after hours, or require further explanation.
Health plans can play a significant role in
educating patients on how to get the most out of
their visit with a health care provider. They can
arrange for translator services for patients and
continuing education courses for providers to
assure cultural and language competency. By
statute, health plans and hospitals have
obligations to educate the public about the use
of advance directives. As importantly, once
advance directives are signed, these documents
must become part of the patient's health record
and must move with the patient from care setting
to care setting. In establishing provider
compensation arrangements, health plans and
facilities must be vigilant in guarding against
the unintended, negative consequences of
financial incentives by implementing programs to
monitor quality of care and patient satisfaction.
The nature of these incentives ought to be
disclosed to patients and providers. In
contracting with health care providers, plans and
facilities should not restrict the provider's
ability to discuss treatment options with the
patient and not take reprisal upon the health
care provider who serves as patient advocate.
Coronary Drug Project Research Group.
"Influence of Adherence to Treatment and Response of
Cholesterol on Mortality in the Coronary Drug
Project." N Engl J Med 1980; 18:1038-1041.
Czajkowski SM, Chesney MA.
"Adherence and the Placebo Effect." in
Schumacher, SK, Schron EB, Ockene JK, et al., editors. The
Handbook of Health Behavior Change. New York:
Springer Publishing Company; 1990.
Davis M, Southerland LI, Garrett JM,
et al. "A Prospective Study of Advance Directives
for Life-Sustaining Care." N Engl J Med 1991;
324:882-8.
General Accounting Office. Report
to Congressional Requesters. Managed Care: Explicit Gag
Clauses Not Found in HMO Contracts, But Physician
Concerns Remain. August 1997.
Health Policy Tracking Service. Issue
Brief: Bans on Gag Clauses. April 1997.
Lavizzo-Mourey R, Mackenzie ER.
"Cultural Competence: Essential Measurements of
Quality for Managed Care Organizations." Ann
Intern Med 1996; 124(10):919-921.
Street RL, Voigt B. "Patient
Participation in Deciding Breast Cancer Treatment and
Subsequent Quality of Life." Med Decis Making
1997; 17:298-306.
Teno JM, Hakim RB, Knaus WA, et al.
"Preferences for Cardiopulmonary Resuscitation;
Physician-Patient Agreement and Hospital Resource Use.
The SUPPORT Investigators." J Gen Intern Med
1995; 10(4):179-86.
Wagner EH, Barrett P, Barry MJ, Barlow
W, Fowler FJ. "The Effect of a Shared Decision
Making Program on Rates of Surgery for Benign Prostatic
Hyperplasia; Pilot Results. Med Care 1995;
33:765-770.
Wennberg J (Producer). Treatment
Choices for Prostate Cancer [Film]. Hanover, NH:
Foundation for Informed Decision Making, 1995.
Wu WC, Pearlman RA. "Consent in
Medical Decision-Making: The Role of Communication."
J Gen Intern Med 1988; 3:9-14.
Statement of the Right Consumers
have the right to considerate, respectful care from all
members of the health care system at all times and under
all circumstances. An environment of mutual respect is
essential to maintain a quality health care system.
Consumers must not be discriminated
against in the delivery of health care services
consistent with the benefits covered in their policy or
as required by law based on race, ethnicity, national
origin, religion, sex, age, mental or physical
disability, sexual orientation, genetic information, or
source of payment.
Consumers who are eligible for
coverage under the terms and conditions of a health plan
or program or as required by law must not be
discriminated against in marketing and enrollment
practices based on race, ethnicity, national origin,
religion, sex, age, mental or physical disability, sexual
orientation, genetic information, or source of payment.
Consumers want to be treated with
respect and they want to be treated fairly. An
environment of mutual respect is essential to maintain a
quality health care system. Incidences of discrimination
-- real and perceived -- mar the relationship between
consumers and their health care professionals, plans, and
institutions. Multiple consumer surveys (Levinson et al.,
1997; Davis et al., 1995; Edgeman-Levitan and Cleary,
1996) have found that many consumers' complaints about
the current health care system have their root in the
perception that people believe they are not being treated
with respect.
Respect has been defined as
recognizing a "person's capacities and perspectives,
including his or her right to hold certain views, to make
certain choices, and to take certain actions based on
personal values and beliefs" (Faden and Beauchamp,
1986). Manifestations of disrespect in the health care
setting described by consumers in recent research
(Levinson et al., 1997) and interviews include: poor
communication with their doctor, feeling rushed or
ignored, lack of dignity during examinations,
experiencing extensive waiting room delays, receiving
inadequate explanations or advice, having inadequate time
with the doctor during routine visits, feeling that
complaints are not taken seriously by providers, and
feeling that providers are more concerned with holding
down the cost of medical care than with giving the best
medical care. Conversely, consumers defined respectful
treatment as that which takes into consideration the
values, preferences, and expressed needs of the patient.
In addition, consumers wanted providers to communicate
well, to be respectful of the patient's time, and to give
emotional support to alleviate the patient's fear and
anxiety.
In order to extend consumers the
respect they deserve, members of the health care industry
should strive to:
A key element of respectful and fair
treatment is protection against discrimination in the
delivery of health care services, and in marketing and
enrollment, for those eligible for coverage under the
terms and conditions of a health plan or program, based
on race, ethnicity, national origin, religion, sex, age,
mental or physical disability, sexual orientation,
genetic information, or source of payment.
- Sex. Disparities in
medical treatment based on sex have been
documented in a number of areas, including:
diagnosis and treatment of coronary artery
disease (Beery, 1995), kidney transplantation and
dialysis, heart transplantation, cardiac
catheterization, and diagnosis of lung cancer
(AMA Council on Ethical and Judicial Affairs,
1991). Researchers have found that women are less
likely to have diagnostic testing, even when
functional disability and risk are higher.
Women's complaints are seen as less urgent, and
fewer referrals follow as a result of this belief
(Tobin et al., 1987). Disparities have also been
found in the quality of the doctor-patient
relationship. For example, one-quarter of women
(compared with 12 percent of men) reported that
they have been "talked down to" or
"treated like a child by a physician,"
and 17 percent of women (compared with 7 percent
of men) had been told that a medical condition
they experienced was "all in their
head" (The Commonwealth Fund, 1993; Horton,
1995).
Race, ethnicity,
national origin, and religion. Discrimination
on the basis of race, ethnicity, national origin,
or religion in the provision of health care has
also been well documented. There is evidence of
disparities in the quality of care, access to
health care (because of language or geographic
barriers), and the amount of care given to
minorities as compared with others (Kahn et al.,
1994; Giles et al., 1995; Rosenbaum et al., 1997;
Smollar, 1988). In the case of facilities or
individuals who accept Federal funds, Federal
civil rights statutes prohibit the denial of
services; the provision of a different service or
services in a different manner from those
provided to others; and the segregation of or
separate treatment of individuals in any matter
related to receiving services (Office of Civil
Rights, 1990).
Age. Discrimination
against consumers based on their age also occurs
in the health care industry including: less
aggressive treatment for elderly women with
breast cancer and lower than average referral
rates for mental health services in older people
(Nattinger et al., 1992; Osteen et al., 1992;
Ayanian et al., 1993). The Age Discrimination Act
of 1972 also prohibits discrimination based on
age by any institution or health care provider
who accepts Federal funds.
Sexual orientation. Gay
and lesbian patients have received reduced care
or have been denied care because of their sexual
orientation (AAPHR, 1994). Discrimination against
gay/lesbian consumers has sometimes been
compounded by fears of HIV.
Disability status.
There is an extensive history of discrimination
against people with disabilities and chronic
illnesses that has led to action by Federal and
State Government. The Americans with Disabilities
Act of 1990 (ADA) prohibits discrimination
against individuals with real or perceived
disabilities in employment, public services,
public accommodations, communications, and
employer-provided health insurance. The Health
Insurance Portability and Accountability Act of
1996 prohibits the exclusion of an individual
from the group insurance market for more than 12
months based on a preexisting medical condition.
The Mental Health Parity Act of 1996 prohibits
differential lifetime or annual caps on coverage
for physical and mental illnesses in certain
situations.
Despite passage of these
landmark laws, not all Americans living with
disabilities or adverse medical conditions have
access to health coverage at a cost they believe
is fair or affordable. This is particularly true
for consumers attempting to purchase coverage in
the individual insurance market. Research into
further refinements in the insurance market is
needed to assist these individuals. The
Commission strongly urges insurers, public and
private purchasers, State and Federal
Governments, and others to explore all policy
options to make health coverage available and
affordable to Americans who wish to obtain it,
especially those who are living with mental or
physical disabilities and chronic illnesses.
Finally, despite recent
improvements, many health care facilities remain
inaccessible to individuals with disabilities
(Savage, 1997). The Commission believes that
elimination of physical and communication
barriers in health care facilities should be a
higher priority for government agencies charged
with enforcing the ADA.
Source of payment. The
health care system currently is undergoing an
historic transformation in which low-income
Medicaid beneficiaries are being enrolled into
private health plans. While this is a positive
development in terms of access for traditionally
vulnerable populations to high-quality care, it
is almost certain to create additional tensions
that could be manifest in discrimination.
Providers who agree to accept Medicaid
beneficiaries must provide equal access, care,
and waiting times to those patients. It will be
vitally important for State and Federal agencies
to closely monitor the provision of care to
Medicaid beneficiaries as they move into new
health plans.
- Consumers will need to be
vigilant in reporting instances of discrimination
based on the factors discussed in this chapter.
Consumers also must extend the same level of
respect to health care providers and others in
the health care system that they demand of same.
An environment of mutual respect is essential to
a healthy relationship between consumers and
those who care for them.
Health
care professionals and other health workers
have the most direct contact with patients and,
therefore, have the greatest responsibility to
treat health care consumers with respect and to
ensure that they do not discriminate. Providers
have a responsibility to listen to patients and
take their concerns and complaints seriously.
Providers also have a responsibility to monitor
their treatment of patients to assure they are
treated with respect and nondiscrimination and to
correct problems when they occur.
Health care facilities
that renovate existing facilities or construct
new ones must meet a high standard of access in
order to avoid discriminating against persons
with disabilities. While there is no ADA
requirement to "retrofit" existing
facilities to make them accessible, there is a
responsibility to remove "readily
achievable" physical and communication
barriers. All health care providers should assess
the level of access in their medical facilities
and take steps to provide effective communication
and unimpeded physical access to the maximum
extent possible.
Health plans will need
to examine the standards and incentives that
exist within their systems that may inadvertently
discourage providers from attending to the
interpersonal aspects of health care quality that
can be manifest as disrespect. Consumers enrolled
in health plans with defined networks of
providers should have access to their plans'
participating providers, without regard to the
source of their coverage (e.g., Medicare,
Medicaid, employer-sponsored plan).
Quality oversight
organizations should utilize tools that allow
accurate measurement of dimensions of health care
quality that reflect consumer concerns about
being treated with respect. Public disclosure of
these findings, together with measurements of
clinical quality of care, cost, benefit, and
other salient information can allow consumers to
determine the relative importance they place on
such information and make their purchasing
decisions accordingly.
Health care worker
education and training programs need to
recognize and act upon the need for improvements
in communication skills by providers. Receiving
inadequate explanations and advice, having
inadequate time to receive answers to questions,
and failure to attend to the need for emotional
support can have adverse consequences on health
outcomes (Bame et al., 1993; Patterson et al.,
1991; Juncos, 1990). Similarly, education and
training programs need to develop and implement
course content addressing the significance of
cultural attitudes on the effectiveness of health
care and the importance of being sensitive to the
varying needs of people with disabilities,
including those with sensory or cognitive
disabilities, who often require auxiliary aids or
extra time and plain-language explanation to
ensure effective communication. Health plans,
hospitals, and other large institutional
providers are encouraged to have on-site
interpreters for any language population that
exceeds a specified standard (e.g., 5 percent or
more) and telephone interpreter services for
other language minorities. Written material
provided to patients should also be translated
for the larger linguistic groups.
AMA Council on Ethical and Judicial
Affairs. Genetic Disparities in Clinical
Decision-Making: Council Report. January 1991;
15(4):25-35.
American Associations of Physicians
for Human Rights. Anti-Gay Discrimination in Medicine:
Results of a National Survey of Lesbian, Gay and Bisexual
Physicians. San Francisco; 1994.
Ayanian JZ, Kohler BA, Abe T, et al.
"The Relation Between Health Insurance Coverage and
Clinical Outcomes among Women with Breast Cancer." N
Eng J Med 1992; 326:1102-1107.
Bame S, Petersen N, et al.
"Variation in Hemodialysis Patient Compliance
According to Demographic Characteristics." Soc
Sci Med, Oct. 1993; 37(8):1035-1043.
Beery TA. "Diagnosis and
Treatment of Cardiac Disease: Gender Bias in the
Diagnosis and Treatment of Coronary Artery Disease."
Heart & Lung. November 1995; 24(4):427-435.
The Commonwealth Fund. The
Commonwealth Fund Survey of Women's Health. New York:
July 1993.
Davis K, Collins KS, et al.
"Choice Matters: Enrollees' Views of Their Health
Plans." Health Affairs, Summer 1995; 9-112.
Edgeman-Levitan S, Cleary PD.
"What Information Do Consumers Want and Need? A
Synthesis of Research to Date, Plus Interviews with
Health Plan Managers and Consumer Advocates." Health
Affairs, Winter 1996; 15(4):42-56.
Faden R, Beauchamp T. A History and
Theory of Informed Consent. New York: Oxford
University Press, 1986; 8-9.
Giles WH, Anda RF, Casper ML, et al.
"Race and Sex Differences in Rates of Invasive
Cardiac Procedures in US Hospitals." Arch Intern
Med 1995; 155.
Horton JA, ed. The Women's Health
Data Book: A Profile of Women's Health in the United
States. Washington, DC: Elsevier; 1995.
Kahn KL, Pearson ML, et al.
"Health Care for Black and Poor Hospitalized
Medicare Patients." JAMA 1994; 27(1).
Juncos LI. "Patient Compliance
and Angiotensin Converting Enzyme Inhibitors in
Hypertension." J Cardiovascular Pharmacol
1990; 15(3):S22-S25.
Levinson W, Roter DL, et al.
"Physician-Patient Communication: The Relationship
with Malpractice Claims among Primary Care Physicians and
Surgeons." JAMA 1997; 277(7):553-559.
Nattinger AB, Gottlieb MS, Veum J, et
al. "Geographic Variation in the Use of
Breast-Conserving Treatments for Breast Cancer." N
Eng J Med 1992; 326:1102-1107.
Office of Civil Rights. Fact Sheet.
U.S. Department of Health and Human Services; 1990.
Osteen RT, Steele GD Jr, Menck HR, et
al. "Regional Differences in Surgical Management of
Breast Cancer." CA Cancer J Clin 1992;
42:39-43.
Patterson R, Greenberger PA, et al.
"Potentially Fatal Asthma; the Problem of
Noncompliance." Ann Allergy, Aug 1991;
67(2):138-142.
Rosenbaum S, Serrano R, et al.
"Civil Rights in a Changing Health Care
System," Health Affairs Jan-Feb 1997.
Savage E. U.S. Department of Justice.
verbal communication; September 1997.
Smollar D. "Success of
Indochinese Students May Vary with Ethnic Factors." Los
Angeles Times, Feb 16, 1988.
Tobin JN, et al. Ann Internal Med.
1987;107.
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