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Hi-Ethics - Imaginologia

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Hi-Ethics - Imaginologia
C h a p t e r
F i f t e e n
Hi-Ethics:
Tough Principles for Earning Consumer Trust
by Donald W. Kemper, MPH
Any realtor can tell you the top three rules
of success in real estate: location, location,
location. The top three rules for success on the
health Internet have become equally clear: trust,
trust, trust. If users don't trust a site, they won't
come back. If doctors don't trust it, they won't
send their patients there, and if regulators don't
trust it, they will put it out of business. Without
trust, the e-health industry cannot work.
organizations. Furthermore, Web sites benefit by
pre-empting the press attacks and bureaucratic
paperwork that might otherwise develop from
uncoordinated interpretations of ethics in an
unregulated space.
Because of the importance of trust, 17 of
the nation's largest, mostly commercial, for-profit
health Web sites were moved to create Hi-Ethics
(Health Internet Ethics) to earn the trust of health
Internet users. This is not a public relations play or
slight-of-hand move. Since the first meeting of HiEthics in November 1999, the emphasis has been
on "earning" trust. The result is a set of principles
that are not only consistent with the aspirational eHealth Code of Ethics, developed by the Internet
Healthcare Coalition, but are also designed with
clear implementation guidelines and for the
purpose of objective verification. This tough set of
ethical principles has put forth the rules by which
ethical health Web sites can play.
Hi-Ethics, Inc., is an association of major
health Web sites as listed in Table 1. These
companies represent many of the most popular
U.S.-based consumer health Web sites. They
include content companies, commerce companies,
interaction companies, and many combinations of
these business features. All but one of the original
members are for-profit. (Healthwise is non-profit.)
The Hi-Ethics principles give protection to
both users and providers of health Web sites. Users
benefit because the principles provide strong and
verifiable rules to prevent privacy and commerce
abuses. Web sites benefit because the same set of
rules takes the guesswork out of what is and is not
acceptable practice. The Hi-Ethics principles
create an even playing field for all e-health
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About Hi-Ethics
Donald W. Kemper, MPH
Don Kemper is CEO of Healthwise, a nonprofit company dedicated to helping people make better health
decisions. Since 1975, he has passionately promoted
medical self-care, shared decision-making, and patient
empowerment. His Healthwise® Knowledgebase is an
award winning Internet tool that translates evidencebased medicine into terms consumers can use in shared
decision-making. Healthwise is the world's leading
provider of prescription-strength health information.
(www.healthwise.org)
Don Kemper is also Chairman of Hi-Ethics, Inc., a
coalition of the most widely used Internet health sites
and content providers that have united to create a
detailed set of ethical principles for health Web sites.
(www.hiethics.org)
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While the business models of these companies
differ dramatically, all share a fundamental need to
earn the trust of consumers. In addition, all feel
that their own Web sites will do best if the cloud
of concern and distrust hovering over the e-health
world could be lifted.
Hi-Ethics was incorporated as a non-profit
company in November of 2000 and filed for
501(C)6 tax exempt status with the federal
government. To achieve its goal of creating
implementable and verifiable standards, Hi-Ethics
engaged the staff-support services of Hogan and
Hartson, a long-established and respected
Washington, D.C. law firm. The Hogan team, led
by former FTC Commissioner Christine Varney,
contributed expert advice on writing the regulatory
language needed to measure and verify
compliance with the principles.
Each Hi-Ethics member was asked to
contribute equally and substantially to provide the
funding for the initial year of operation.
Officially, the Hi-Ethics principles are
called the "Ethical Principles for Offering Internet
Health Services to Consumers." The principles
cover the five areas of privacy, commerce,
information quality, professionalism, and
disclosure. (See Appendix B to read complete
principles, or visit www.hiethics.org.) Each ethics
area is discussed below:
Privacy Principles
The first three principles set clear rules for
protecting the privacy of health Web site users.
These principles cover the following key points
for the health Web sites of Hi-Ethics members:
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Hi-Ethics Chairman: Donald W. Kemper
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Healthwise, Incorporated
adam.com
allHealth.com/iVillage
America Online
drkoop.com
HealthCentral.com
HEALTHvision
Healthwise
InteliHealth
LaurusHealth.com
Medscape
PersonalMD
Veritas Medicine
WebMD
WellMed
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The Hi-Ethics Principles
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Table 1
Hi-Ethics Participants
August, 2001
C o n s u m e r
The Web site must have and display a privacy
policy;
It must disclose proposed uses of information
and limit the uses of personalized health
information to those that are in the best
interest of the consumer;
It must provide users with a meaningful choice
regarding the proposed collection and use of
personal information and require a specific
"opt-in" before providing personal health
information to any third party; and
It must provide assurance of security
procedures to protect against unintended
access to personal information.
Commerce Principles
Principles four, five, and six focus on
protecting the user from unethical commerce. The
basic concepts of openness and transparency were
followed to assure that health Internet users were
not misled into services, products, or behaviors not
in their own best interest. Disclosure was used
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here, rather than restrictions, so as not to unduly
constrain the business models of Hi-Ethics’
member sites. Key Hi-Ethics rules include the
following:
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Š
Š
Š
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Principles seven, eight, and nine focus on
the quality of health information presented on
health Web sites. The writers of the principles
attempted to accommodate the health Web user's
competing needs for high quality, evidence-based
information, as well as for unrestricted access to
differing points of view and alternative medicine
approaches. The key points of these principles,
summarized below, provide for full disclosure of
quality factors without imposing restrictions on
what is allowable. Hi-Ethics Web sites will offer:
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Š
Š
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Disclosure of ownership and financial
sponsorship;
Clear distinction between content and
advertising;
Clear disclosure of sponsor involvement in
content;
Clear disclosure of how the site earns revenue
from consumer use;
Clear disclosure of whether information or ads
are targeted based on user's content selection;
and
Restrictions on promotional offers.
Quality Principles
Only therapeutic benefit claims with
reasonable support and no knowingly false
information;
Disclosure of sponsor support of, and
involvement with, content;
Disclosure of the author or source of third
party content;
Disclosure of authors for content claim to be
based on research or clinical experience;
Disclosure of editorial policy and author
credentials;
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Disclosure of the date of creation or updates
for all self-created content; and
A conflict of interest policy for affiliations and
the financial relationships of authors.
Consumer concern about the quality of
information is second only to concern over
privacy. Sixty-five percent of health site users feel
confident in the quality of Internet health
information while only 42% are confident in the
privacy and confidentiality of health Internet
services (Ethical Issues Awareness of eHealth Site
Users vs. Developers, Harris Interactive and the
Internet
Healthcare
Coalition,
Consumer concern
2000). Another a b o u t t h e q u a l i t y o f
survey indicates i n f o r m a t i o n i s s e c o n d
that 36 percent o n l y t o c o n c e r n o v e r
of consumers
privacy.
are frustrated
with content
credibility while 41 percent are concerned enough
with privacy that they would not submit personal
information to a commercial site (Jupiter
Research, 2001).
While the Hi-Ethics quality principles
provide a sound foundation of protection for
consumers, they do not assure that only the best,
evidence-based medical information is provided
on the sites. To do that would have been overly
restrictive on such valuable features as self-help
group chat rooms or patient bulletin boards.
The principles do provide a solid
foundation for preventing most unethical and
commercially biased efforts to influence consumer
behavior. More importantly, the principles will
require the disclosure of information that the
consumer can use to assess the quality of
information. Yes, consumers deserve access to
evidence-based, up-to-date, and expert-reviewed
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information. With the Hi-Ethics disclosure
requirements in place, they will be able to
determine if they are getting it. (See PrescriptionStrength Information bar.)
Professionalism Principles
Hi-Ethics encourages health care
professionals to apply and follow the ethical
standards of their respective professions whenever
possible. However, these professional codes do not
always apply to every interaction between a
consumer and a professional. While Hi-Ethics
expects that the principles governing professional
activities on the Internet will evolve dramatically
over the next few years, its initial principles 10
and 11 do highlight the following points:
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Š
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Conspicuous and appropriate information will
be available for consumers to understand when
they are and are not in an interaction with a
health professional that is covered by the
ethical standards of the profession.
Health Web sites will be designed to enable
health care professionals to adhere to
professional ethical principles in the online
environment.
Credentials and qualifications of persons
responsible for health care services will be
available.
Disclosure and Feedback Principles
The final three Hi-Ethics principles cover
issues of transparency, limitations, and feedback
including the following:
Š
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Disclosure of risks, responsibilities, and
reasonable expectations;
Disclosure of when a user moves into areas of
greater or lesser risk;
Disclosure of any limitations of the health
Web site as a source of health care services;
and
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Ease of consumer feedback or complaint
submission.
Hi-Ethics has also provided a
comprehensive glossary of terms used within the
principles to remove the risk of multiple
interpretations of their intent. To further the goal
of consistent use of terminology, Hi-Ethics has
initiated a joint project with the Internet
Healthcare Coalition, the American Medical
Association, and the Health on the Net Foundation
(HON) to develop a common vocabulary.
Compliance, Verification and Accountability
It is clear that an ethical code relying
solely on self-evaluation will not be treated as
serious industry self-regulation. Therefore, HiEthics has set about to create a compliance,
verification, and accountability program with
"teeth." Any Web site that wishes to claim that it
meets the Hi-Ethics principles will have to subject
itself to the scrutiny of an independent review.
In Spring 2001, Hi-Ethics announced that
it had selected the URAC accreditation process as
the mechanism by which Hi-Ethics members will
demonstrate compliance with the 14 Hi-Ethics
Principles. URAC is a non-profit health
accreditation organization. Its standards for the
accreditation of health Web sites are based on the
Hi-Ethics Principles, and Hi-Ethics members were
active participants in the development of the
URAC standards. By working with URAC, HiEthics will promote accountability for all health
Web sites. By meeting the URAC standards, HiEthics members will demonstrate their
commitment as leaders in the promotion of health
Internet quality and consumer trust.
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A Global System of Codes
Hi-Ethics is committed to working with
the AMA, Internet Healthcare Coalition, URAC,
HON, and others to create a system of health
Internet ethical codes that use common
terminology and that inter-relate to one another.
While the ethical foundation of all of these codes
is consistent, and although many of the code
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elements are nearly identical, the varying needs of
different health Web site types may continue to
require a variety of seal or certification programs.
Hi-Ethics intends to work cooperatively both
nationally and internationally to assure that the
evolving system of codes is both understandable to
the public and efficiently implementable for the
Web sites. „
Prescription-Strength Information
Health consumers are demanding the same quality of information that is available to their doctors. They want information that is good enough to bet their lives and their health on. Too much of the health Internet is covered with
inch-deep, mile-wide content. Such content gives a little information on every health problem, but it offers little
help in making serious, and often complex, medical decisions. For these consumers, a Web site that doesn't help
them make a better decision simply doesn't help. To meet the needs of the consumer, Web sites must offer prescription-strength information.
Prescription-strength information is:
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Evidence-based
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Reviewed by experts
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Referenced
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Decision-focused
Evidence-based
Evidence-based medicine is founded on the study of randomized clinical trials and other objective research. Only
when theories and opinions are tested and confirmed by high quality, objective research can physicians determine
which treatments are best for which conditions. The evidence-base of medical science is expanding every year.
Unfortunately, there is often a delay in getting new evidence-based findings into practice quickly. Doctors, like any
other group, are sometimes averse to making changes in how they practice medicine.
But patients need not wait for their doctors to give them the best information about diagnostic and treatment
options. Consumers know that, and increasingly, are demanding the best and most current information directly
from hospital and health plan Web sites, as well as general health portals. One element of prescription-strength
information is that it must be evidence-based.
Reviewed by experts
Internet users should check to see that recognized experts in appropriate medical specialty areas review the health
information. A good Web site will indicate to the consumer when and by whom each piece of health information
has been reviewed. Reviewer credentials should include board certification and academic appointments at the
nation's leading medical schools or other measures of credibility.
Referenced
Prescription-strength information should be referenced to dated source materials so that consumers can tell both
the age and authentification of the results. The names and credentials of the authors should be listed.
Decision-focused
To be most helpful, prescription-strength information should be organized around key medical decisions. Shared
decision-making between patient and professional, results in the best health decisions and the best medical outcomes. When prescription-strength information is presented in ways to help doctors and patients work together to
make better decisions, huge benefits result.
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Hi-Ethics: Ethical Principles for
Offering Internet Services to Consumers
Questions and Answers
What is Hi-Ethics?
Hi-Ethics, Inc., or Health Internet Ethics, is a coalition
of the most widely used Internet health sites and
content providers that united to create a detailed set of
ethical principles for health Web sites. Our goal is to
earn consumer trust and confidence.
What are the Hi-Ethics principles?
The document is entitled "Hi-Ethics: Ethical Principles
for Offering Internet Services to Consumers." It is a
14-point set of principles that the member organizations
will follow in order to help consumers confidently
realize the fullest benefits of the Internet to improve
their health and that of their families. These principles
set high standards for consumer protection, including
privacy, security, quality of information, fairness of
transactions, and professional conduct.
Why was Hi-Ethics formed?
Hi-Ethics was formed in November of 1999 to address
privacy, advertising, and content quality issues for
Internet health consumers. While the Internet presents
enormous opportunities to empower consumers to take
charge of their health and well-being, there are so many
Web sites offering health information and services that
consumers may have trouble distinguishing reliable
Web sites from unreliable Web sites. Hi-Ethics member
companies have set standards to help operators of
health Web sites offer quality services and to help
consumers use the Internet to its greatest potential.
How were the Hi-Ethics principles developed?
Executives from Hi-Ethics member companies met
frequently between November 1999 and May 2000 to
develop the first version of the principles. In January
2000, the companies enlisted the help of attorneys from
Hogan & Hartson LLP, a Washington, D.C. law firm
with extensive experience in health and Internet privacy
and regulatory issues. Members drew on each
company's own policies and practices and compared
them with ethical standards from medical, publishing
and other fields. The goal was to establish principles
broad enough to apply to a wide variety of health
Internet businesses but also specific enough to really
help consumers. The principles were launched in May
of 2000. Hi-Ethics is currently working with other
organizations to develop a second, updated version of
the principles.
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common goal with government policy makers, and that
is to provide consumers with a secure and trustworthy
health Internet environment. Hi-Ethics members can
swiftly adopt industry standards and bring their benefits
to consumers in a shorter timeframe than government
regulations. These industry standards have been
developed by health Internet experts who actually have
the power to implement them. This allows the industry
itself to find innovative solutions that encourage
business growth while at the same time help consumers
to achieve the fullest potential of the Internet.
How will these principles be verified and the
companies kept accountable for adhering to them?
Hi-Ethics, Inc. has signed an agreement with URAC
whereby Hi-Ethics members can verify compliance
with the principles. By applying for URAC Health
Web Site Accreditation--the standards of which are
based on the Hi-Ethics principles--the companies can
certify compliance with the Hi-Ethics principles.
How will consumers know a Hi-Ethics site when
they see one?
Hi-Ethics members will display the URAC
accreditation seal, which will signify that a site has met
rigorous quality standards based on the Hi-Ethics
principles. In addition to displaying the URAC
accreditation seal, all members of Hi-Ethics, Inc., are
listed on the Hi-Ethics Web site, www.hiethics.org.
Will Hi-Ethics expand its membership?
The members of Hi-Ethics, Inc. are eager to have other
health Web sites endorse the Hi-Ethics principles and
participate in the development of a second version of
the principles. A process for joining the effort is
outlined at www.hiethics.org.
How can one get more information?
Visit the Hi-Ethics Web site at www.hiethics.org.
Why develop industry standards now instead of
waiting for government regulation?
Hi-Ethics is in favor of the most ethical provision of
health services over the Internet. Members share a
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