1. Patient Rights:
U.S. and European
Perspectives
Carole Baas, Ph.D.
Patient Advocate, ECOG-ACRIN
Advocate in Science, Susan G. Komen
Founding Editor, Convergent Science Physical Oncology
RISE Mentor & Research Think Tank, Young Survival
Coalition
National Council of Research Advocates, National Cancer
Institute

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ABOUT | PATIENT RIGHTS
Join with us for a bright future
Patient Rights are the basic rules of conduct between patients and medical caregivers as well as the
institutions and people that support them. They are a key foundation of a responsible healthcare system,
providing protections to patients and their families to further the goal of improved patient outcomes.

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Human Rights and the Advent of Patient Rights
The Universal Declaration of Human Rights (1948) recognizes “the inherent dignity” and
the “equal and unalienable rights of all members of the human family”.
Patient Rights was developed on the basis of this concept of the person, and the
fundamental dignity and equality of all human beings.
PATIENT BILL OF RIGHTS | ORIGIN AND HISTORY

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PATIENT BILL OF RIGHTS | ORIGIN AND HISTORY
“Assuring that the rights of patients are protected requires more than
educating policy makers and health providers; it requires educating
citizens about what they should expect from their governments and
their health care providers—about the kind of treatment and respect
they are owed.
Despite variations in local legislation and administration of patients’
rights, it is important… that patients receive treatment consistent
with the dignity and respect they are owed as human beings.”
~ Statement by the World Health Organization (WHO)

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There’s more than one Patients’ Bill of Rights
• Patients’ rights vary in different countries and in different
jurisdictions, often depending upon prevailing cultural and
social norms.
• European Charter of Patients’ Rights (2002) is based on the
Charter of Fundamental Rights of the European Union.
• European Charter of Patients’ Rights states 14 patients’ rights
that together aim to guarantee a “high level of human health
protection.”
PATIENT BILL OF RIGHTS | European Perspective

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Patients’ Bill of Rights Varies Across the U.S.
• In the early 1970’s the American Hospital Association drafted a Bill
of Rights to inform patients of what they could reasonably expect
while in the hospital.
• Since then, various groups have developed a number of different
declarations, so that there’s more than one version of the
Patient’s Bill of Rights.
• In 2010, a new Patient’s Bill of Rights was created along with the
Affordable Care Act.
• Certain U.S. states have their own bills of rights for patients.
Insurance plans sometimes have lists of rights for subscribers.
PATIENT BILL OF RIGHTS | U.S. Perspective

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The Patient’s Bill of Rights was created to reach 3 major goals:
1. To help patients feel more confident in the U.S. health care system,
the Bill of Rights:
• Assures that the health care system is fair and it works to meet patients' needs
• Gives patients a way to address any problems they may have
• Encourages patients to take an active role in staying or getting healthy
1. To stress the importance of a strong relationship between patients
and their health care providers.
1. To stress the key role patients play in staying healthy by laying out
rights and responsibilities for all patients and health care providers.
U.S. PATIENT BILL OF RIGHTS | GOALS

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Information about
their treatment
Taking Part in
Treatment
Decisions
Confidentiality
and Privacy
Choice of
Providers of
healthcare
Non-
Discrimination
Patient’s best
interests
Right to Appeal
Access to
Emergency
Services
Standard of Care
PATIENT BILL OF RIGHTS | General Concepts

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Patient’s Bill of Rights and Responsibilities includes:
Choice of providers
• You have the right to choose health care providers who can give you high-quality
health care when you need it.
Information for patients
• You have the right to accurate and easy-to-understand information about your
health plan, health care professionals, and health care facilities. If you speak
another language, have a physical or mental disability, or just don’t understand
something, help should be given so you can make informed health care decisions.
U.S. BILL OF RIGHTS | CHOICE OF PROVIDERS | INFORMATION

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Access to emergency services
If you have severe pain, an injury, or sudden illness that makes you believe your
health is in danger, you have the right to be screened and stabilized using
emergency services.
You should be able to use these services whenever and wherever you need
them, without needing to wait for authorization and without any financial
penalty.
U.S. BILL OF RIGHTS | EMERGENCY SERVICES

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Taking part in treatment decisions
You have the right to be informed about your treatment options and take part in
decisions about your care. You have the right to ask about the pros and cons of any
treatment, including no treatment at all.
As long as you are able to make sound decisions, you have the right to refuse any test or
treatment, even if it means you might have a bad health outcome as a result.
You can also legally choose someone who can speak for you if you cannot make your
own decisions. The completed and signed document, called Advance
Directives, appoints someone to do this.
U.S. BILL OF RIGHTS | TREATMENT DECISIONS
FREE CHOICE

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Respect and non-discrimination
You have a right to considerate, respectful care from your doctors and other healthcare
providers that does not discriminate against you based on race, ethnicity, national
origin, religion, sex, age, mental or physical disability, sexual orientation, genetic
information, or source of payment.
Complaints and appeals
You have the right to a fair, fast, and objective review of any complaint you have against
your health plan, doctors, hospitals, or other healthcare personnel.
This includes complaints about waiting times, operating hours, the actions of health
care personnel, and the adequacy of health care facilities.
U.S. BILL OF RIGHTS | NON-DESCRIMINATION | RIGHT TO APPEAL

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U.S. BILL OF RIGHTS | PATIENT’S BEST INTEREST
Right to treatment in the patient’s best interest
A physician is a healthcare fiduciary:
"A Fiduciary obligation in medicine means that the physician focuses exclusively on
the patient's health; The patient assumes the doctor's single minded devotion to him;
and the doctor/patient relationship is expected to be free of conflict."
~ Laurence B McCullugh, A Primer on Bioethics (2nd Edition 2006)
Fiduciary: a person who has a duty to act primarily for another's benefit. Also, pertaining to the
good faith and confidence involved in such a relationship.

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U.S. BILL OF RIGHTS | CONFIDENTIALITY AND PRIVACY
Confidentiality (privacy) of health information
You have the right to talk privately with health care providers and have your health care
information protected.
You also have the right to read and copy your own medical record. You have the right to ask
that your doctor change your record if it’s not correct, relevant, or complete.
Confidentiality and privacy laws:
HIPPAA privacy rule protects all “individually identifiable health information.”
Includes demographic data that relates to:
• Past, present or future physical or mental health conditions
• Provision of health care to the individual
• Past, present, or future payment for provision of healthcare

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Right to Preventive Measures
Every individual has the right to a proper service in order to prevent illness.
Right to Swift Treatment
Each individual has the right to receive necessary treatment within a swift and
predetermined period of time. This right applies at each phase of the treatment.
Right to the Observance of Quality Standards/Standard of Care
Each individual has the right of access to high quality health services on the basis of the
specification and observance of precise standards.
BILL OF RIGHTS | European Charter of Patient Rights

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Right to Safety
Each individual has the right to be free from harm caused by the poor functioning of
health services, medical malpractice and errors, and the right of access to health
services and treatments that meet high safety standards.
Right to Innovation
Each individual has the right of access to innovative procedures, including diagnostic
procedures, according to international standards and independently of economic or
financial considerations.
Right to Avoid Unnecessary Suffering and Pain
Each individual has the right to avoid as much suffering and pain as possible, in each
phase of his or her illness.
7/8 BILL OF RIGHTS | European Charter of Patient Rights

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Right to Personalized Treatment
Each individual has the right to diagnostic or therapeutic programs tailored as much as
possible to his or her personal needs.
Right to Compensation
Each individual has the right to receive sufficient compensation within a reasonably
short time whenever he or she has suffered physical or moral and psychological harm
caused by a health service treatment.
BILL OF RIGHTS | European Charter of Patient Rights

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Patient Responsibilities
• Patients must tell their health care providers about any drugs or supplements
they are taking, and about health conditions and medical or surgical problems in
the past or present.
• Ask questions or request further information from healthcare providers if they do
not completely understand health information and/or instructions they’ve been
given.
• Patients must also take responsibility for their lifestyles to help improve their own
health. (For example, following a treatment plan, exercising, and not using
tobacco.)
• Treat healthcare workers and other patients with respect.
• Try to pay their medical bills, and follow the rules and benefits of their health plan
coverage.
BILL OF RIGHTS | PATIENT RESPONSIBILITIES
Having patients involved in their care increases the chance of the best possible outcomes and helps
support a high quality, cost-conscious healthcare system.

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• The doctor and patient are partners in care. The doctor makes recommendations, but no
treatment will be given without the patient’s consent.
• Doctors generally speak directly with the patient. Family members may be included, but
the patient – not the family – will make the decisions.
• It is acceptable and common to obtain a second opinion. Your doctor will not take offense.
• Even if you begin treatment, you have the right to change your mind at any point.
• You are encouraged to ask questions (to your doctor, to your nurse) if you do not
understand something.
• Controlling pain and nausea are very important and no one wants you to suffer. If you
experience pain, tell your doctor.
• You decide who to tell about your cancer. Some people like to keep it private and other
people share it openly.
Norms for Cancer Care
BILL OF RIGHTS | Key Concepts
~ Bob Riter, Cancer Resource Center of the Finger Lakes

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Website: PATIENT’S BILL OF RIGHTS.
http://www.cancer.org/treatment/findingandpayingfortreatment/understandingfinancialandlegal
matters/patients-bill-of-rights. Accessed February 1, 2016.
Website: WORLD HEALTH ORGANIZATION – Patients’ Rights.
http://www.who.int/genomics/public/patientrights/en/. Accessed February 2, 2016.
Website: UNITED NATIONS: The Universal Declaration of Human Rights.
http://www.un.org/Overview/rights.html. Accessed February 2, 2016.
Website: EUROPEAN CHARTER OF PATIENTS’
RIGHTS.http://ec.europa.eu/health/ph_overview/co_operation/mobility/docs/health_services_co
108_en.pdf. Accessed February 2, 2016.
Barry R. Furrow, Thomas L. Greaney et al; Health Law, Cases Materials and Problems, 6th
Edition
Nawaz Merchant, MS Health Policy, Thomas Jefferson University, School of Population Health
Sanford Jeames, DHA, Patient Advocate for ECOG-ACRIN, AACR, and ASCO
Bob Riter, Cancer Resource Center of the Finger Lakes
REFERENCES

21. Get in Touch
As a cancer survivor myself, I am dedicated to improving the care
of cancer patients worldwide and to supporting top-quality,
impactful research that will increase our understanding of cancer
and improve patient outcomes. Contact me to learn more about
how we can make the patient voice an integral part of medicine.
2700 Lago Vista Loop,
Irving, TX 75062 USA
carole.baas@gmail.com
iopscience.iop.org
/2057-1739