Cancer is an expensive illness involving information and medical terms you never thought you needed to learn. Anyone living with cancer and receiving treatment has certain rights. The Patients’ Bill of Rights and HIPAA (Health Insurance Portability and Accountability Act) guarantee medical care and protect individuals’ medical record.

Patient Rights

Under a federal law, you have the following rights:

  • Access to your medical records
  • Notification of your privacy rights
  • Your doctor, treatment team and insurance carrier cannot disclose your medical information to anyone without your written permission, except medical staff within the hospital
  • Your health information cannot be used for marketing or advertising purposes
  • Ability to file a formal complaint if these rights have been violated
  • Permission to ask questions to ensure that your medical information is being protected
  • The right to request changes and additions to your medical records

Health Insurance Portability and Accountability Act (HIPAA)

HIPAA gives you the right to control who may receive your medical records and which information they may receive.

When you visit a health care professional or are admitted to a hospital for the first time, you will receive HIPAA forms. Signing these forms states that you know your rights with regard to control over your medical information.

Protecting Your Privacy and Confidentiality

Being in control of your health care information is very important. Your rights and privacy are protected by law. As a patient, you will be asked to share your medical information with your trusted doctor and health care team. Your medical information is protected by law and can only be shared with your permission. Knowing this will allow you to answer your doctor’s questions more honestly and fully, which will improve the care you receive. You can also authorized a loved one or friend to have access.

Your personal medical information consists of (1) your full legal name, (2) your address, (3) your phone number, (4) your actual medical record and (5) the medical history of family members.

Patient Responsibilities

To get the best medical care, you should:

  • Provide information about past illnesses, hospitalizations, medications and other health-related information
  • Request simpler information from the health care staff if you do not understand the explanations or instructions
  • Inform your doctor and caregiver if you expect problems following a prescribed treatment
  • Provide information about your insurance coverage
  • Work with hospital staff to make a payment plan
  • Make sure the hospital has a copy of your advance directives (see the “Advance Care Planning” fact sheet for more information)
  • Know that patients are asked to make reasonable compromises to the needs of the hospital, other patients or hospital staff

What to Expect During a Hospital Stay

People are concerned when they have to go into the hospital. It helps you cope if you are aware of what you are guaranteed by law:

  • Considerate, respectful hospital care
  • A clean, safe environment
  • A non-smoking room
  • Medical treatment without discrimination
  • Emergency care, if you need it
  • Names, positions and functions of all hospital staff involved in your care
  • The right to refuse participation in research
  • Family members and other adults to be given priority visitation

Edited by Elizabeth Ezra, OSW-C, LCSW

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This fact sheet was made possible by Takeda Oncology and AbbVie.

Last updated August 07, 2017

The information presented in this publication is provided for your general information only. It is not intended as medical advice and should not be relied upon as a substitute for consultations with qualified health professionals who are aware of your specific situation. We encourage you to take information and questions back to your individual health care provider as a way of creating a dialogue and partnership about your cancer and your treatment.

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