ASPEK BIOETIKA

e-HEALTH
Aliandri
Divisi Bioetika-Humaniora-Medikolegal & Profesionalisme
MEU – Fakultas Kedokteran USU
2013
What is e-Health?
 e-Health : transfer of health resources and health
care by electronic means (WHO)
 Three main areas:
1. Delivery of health information, for health
professionals and health consumers, through
internet and telecommunications
2. Using the power of IT and e-commerce to
improve public health services, e.g. through the
education and training of health workers
3. The use of e-commerce and e-business
practices in health systems management.
 e-Health provides a new method for using
health resources (such as information,
money, and medicines), and in time should
help to improve efficient use of these
resources
 Internet provides a new medium for

information dissemination, and for

interaction & collaboration among
institutions, health professionals, health
providers & public
 e-Commerce : production, distribution,
marketing, sale or delivery of goods & services
by electronic means, i.e. conducting business
over the internet (WTO)
 The reduced costs, the amount of information

available and the speed of doing business on-

line are creating a revolution in the way that
business is conducted
 Access to the required technology is an issue

for e-health, as for all information

communication technologies
 Tele-health includes surveillance, health
promotion and public health functions (includes
computer-assisted telecommunications to
support management, surveillance, literature &
access to medical knowledge)
 Tele-medicine : the use of telecommunications
to diagnose & treat disease and ill-health.
 Telematics for health : a WHO composite term
for both tele-medicine & tele-health, or any
health-related activities carried out over
distance by means of information
communication technologies.
PROBLEMS …
 Internet offers real potential to improve
well-being by offering unprecedented
access to health information, products, and
services
 At the same time, it also makes possible

forms of communication and kinds of

practice that raise ethical, social, and legal
concerns
 Trust is a fundamental concern in e-health.
Indeed, it is fundamental to health care.
 To receive the care they need, patients must

share private information & be willing to

take medications, use medical devices, or
often accept interventions that intrude on
their bodies
 They rely on health care providers to keep

their personal information confidential, to

provide accurate & appropriate information
about their conditions and possible
treatments, and to recommend the therapy
they believe to be in the patient’s interest
 Trust can be particularly difficult to sustain
in the anonymous, virtual environment of
the Internet and World Wide Web
 Anyone, anywhere, who has access to a

computer, a link to Internet, and modest

technical skill is able to set up a web page
offering health information, products, or
services, regardless of his or her
qualifications
 Anyone, anywhere is able to present him-

or herself as a patient-whether to a health

care professional or to an online patient
community-whatever his or her actual
health status
 Unlike traditional health care, Internet is not
restricted by geographical or political
boundaries, making it possible for users to
seek, and others to offer health information,
products & services across international or
local borders-where different languages may
be spoken, and different laws govern how
medical professionals are licensed, how
health products or services may be advertised
& sold, how personal information is handled
 Importantly, with the technology currently
available, health care professionals cannot
examine a patient who seeks personal advice
or services over internet
 Instead, caregivers must rely on what an “e-

patient” tells them — about symptoms or

health habits or concerns — and thus work
without much of the rich information that a
physical exam and face-to-face conversation
would provide
e-Health Code of Ethics
 An important part of the effort to make it
possible for the Internet to realize its potential
to enhance people’s health status and well-
being worldwide
 Goal of the code : to help create a trustworthy
environment for all users, whether they are
patients, health care professionals, website
sponsors, people who develop health
applications & content for the web, or
individuals who turn to the internet to help
them stay well
Principles of the e-Health Code of Ethics
Identify the fundamental values in creating
conditions for trust :
1. Candor & Honesty
2. Quality of information, products &
services
3. Respect for individuals’ right to give
informed consent
4. Respect for privacy & protection of
confidential information
5. Professionalism in Online Health Care
6. Responsible Partnering
7. Accountability
Ethical Foundations of e-Health
 Philosophical foundation of the e-Health Code of
Ethics is the principle of respect for persons
  Ethical obligation to treat each individual as
having dignity & moral worth him- or herself,
and never simply as a means to someone else’s
purposes
  Treat individuals as independent decision
makers and allow them to make choices (about
what products to buy, what services to use, what
is most important in living a good life) based on
their own values
 That doesn’t mean that anything goes, that
we should or do permit individuals to make
just any choices or act in just any ways
 Do not condone murder, or permit people to

voluntarily sell themselves into slavery,

condemn torture or exploitation
 Care givers have a strong ethical duty to

acknowledge individual dignity and allow

individuals to make well thought through
decisions about how they live their lives
Candor & Honesty
 To treat someone with respect requires that
we be forthcoming & truthful with patients
 Present ourselves fairly, neither withholding

information nor presenting information in

ways that lead patient to form mistaken
impressions about us
 Requires that we be both candid & honest
Quality
 Health is a foundation for enabling
individuals to form & carry out life plans &
to enjoy all other goods
 Serves important human needs especially

relieving pain, suffering, and disability, and

preventing premature death
 It expected that information, products, and

services offered in the name of health and

health care will be of high quality
 Quality: at minimum information must be

accurate and not misleading, easy to

understand & up to date
Informed Consent
 Respect for persons as autonomous decision
makers requires that we acknowledge
individuals’ right to decide what will be done
to their bodies and to determine what we may
do with their personal information
 Given the technical ability of websites (or

even third parties) to collect personal data

without users’ knowledge, informed consent
becomes a particularly important condition
for a trustworthy health internet
 Health Internet websites that collect personal
information about visitors have an obligation to
clearly disclose what information they gather and
for what purposes they use personal data, as well
as whether they share that information and if so,
with whom
 They have a further obligation to allow visitors

themselves to decide for themselves whether they

will permit such uses of their information, by
explicitly seeking visitors’ informed consent for
specific data-gathering and data-sharing activities
Privacy & Data Security
 Privacy is generally understood to be an
instrumental value
 Privacy enhances our ability to form and

sustain the kinds of intimate relationships

important to our flourishing as human beings
 Privacy and confidentiality are widely seen as

essential to health care

 To receive needed care, patients perforce

must often reveal information about

themselves that is highly sensitive
 Patients must be able to trust that their
personal health information will be kept
confidential and will not be inappropriately
disclosed or used in ways that could harm
them
 Privacy involves a bundle of rights: physical

privacy (to prevent unwanted or unwelcome

intrusions on our bodies and minds),
decisional privacy (to forestall intrusions on
our capacity to make choices for ourselves
based on our individual values &
understanding of what is in our best
interest), &  informational privacy (to
control how we are known in the world)
Professionalism
 Health care professionals who practice on
the internet must help “e-patients”
understand the limitations of online health
care
 The Internet should not changes

practitioners’ fundamental ethical

obligations to live up to their professional
commitments to do no harm, to put
patients’ and clients’ interests first, and to
protect confidentiality
 Online health care also imposes new
professional duties arising out of this
fundamental ethical requirement, however,
that are specific to the Internet environment
 Help e-patients understand when an online

relationship cannot substitute a face-to-face

visit with a physician or other professional
 Obey the laws and regulations that govern

offline practice, such as medical licensing or

public health reporting laws
Responsible Partnering
 Health-related websites are rarely self-contained
entities, may be sponsored by one party and
hosted by a different one
 Specific content for the site may be developed by
a variety of different people or organizations
 Health information might be drawn from
published sources, or developed by site staff or
special consultants, or provided by the entities
whose products or services are made available
through the site
 Most e-health sites are in fact a network of such
business relationships
 These online business relationships are
governed by principles of business ethics that
apply to the offline world
 Sites must assert editorial control over their

content, assuring that sponsors or advertisers

do not inappropriately dictate how
information will be presented to users or how
search results will be displayed for specific
information
Accountability
 Sites must make reasonable efforts to monitor
their own performance, and give visitors
meaningful ways to provide feedback
 Sites must also develop appropriate ways of
responding to users’ feedback and assure that
staff understand and follow those procedures
 e-Health sites should take guidance from

continuous quality improvement efforts in other

sectors of health care to help assure that their
operations uphold the e-Health Code of Ethics
Terima Kasih