Patient Rights
All patients have certain healthcare rights, including privacy and transparent market practices
A GUIDE TO PATIENT RIGHTS TERMS
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Patient Privacy
A fundamental expression of respect for patient autonomy as a subset of human rights. This encompasses a variety of factors, including physical privacy (e.g. personal space), informational privacy (e.g. personal data), decisional privacy (e.g. personal choices, including cultural and religious affiliations), and associational privacy (e.g. personal relationships with family members).
Protected Health Information (PHI)
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Also known as “individually identifiable health information,” PHI is protected personal patient information including demographic data, the individuals’ past, present, or future health and healthcare payments, and the healthcare provided to the individual.
De-Identified Health Information
Health information that is not restricted in its use or disclosure. This information neither identifies nor provides a reasonable basis to identify an individual.
Covered Entities
Individuals and organizations subject to the HIPAA regulations. These may include healthcare providers, health plans, healthcare clearinghouses, and business associates..
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Notice of Privacy Practices
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A notice that all covered entities are required to provide describing how they are permitted to use and disclose PHI, and when they do not need an individual’s permission to use or disclose such PHI.
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Informed Consent
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A process in which your healthcare provider gives you the information you need to make educated decisions about your care. This information should include details of your diagnosis, risks of care, and benefits of care.
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Good Faith Estimate
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A list of expected charges before you receive healthcare services. You would only receive this if you do not have insurance or are not using insurance to pay for your care. It is important to note that this is not a final bill.
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Recent Patient Rights Legislation
Health Insurance Portability and Accountability Act (HIPAA) of 1996
HIPAA establishes federal standards protecting sensitive health information from being disclosed without a patient’s consent. Two key aspects of HIPAA are the Privacy Rule and the Security Rule.
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The Privacy Rule
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Addresses the use and disclosure of individuals’ protected health information (PHI) by covered entities.
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Contains standards for individuals’ rights to understand and control how their health information is used.
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There are circumstances where the law permits covered entities to disclose protected health information. Learn more here. And here.
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Applies to all individually identifiable health information held or transmitted by a covered entity in any form, whether electronic, oral, or written.
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The Security Rule
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Protects a subset of information covered by the privacy rule which includes all individually identifiable health information that a covered entity creates, receives, maintains, or transmits electronically.
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Does not apply to personal health information that is transmitted orally or in writing.
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Covered entities are permitted to use and disclose PHI without an individual's consent for the following limited purposes:
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To the individual
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A covered entity may disclose protected health information to the individual who is the subject of the information.
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Treatment, payment, and healthcare operations
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A covered entity may use and disclose protected health information for its own treatment, payment, and health care operations activities.
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Opportunity to agree or object
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Informal permission may be obtained by asking the individual outright, or by circumstances that clearly give the individual the opportunity to agree or object.
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Incident to an otherwise permitted use and disclosure
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The Privacy Rule does not require that every risk of an incidental use or disclosure of PHI be eliminated. A use or disclosure of PHI that occurs as a result of an otherwise permitted use or disclosure is permitted as long as the covered entity has adopted reasonable safeguards as required by the Privacy Rule, and the information being shared was limited to the "minimum necessary," as required by the Privacy Rule.
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Public interest and benefit activities
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The Security Rule permits use and disclosure of protected health information, without an individual's authorization or permission, for 12 national priority purposes:
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When required by law.
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For public health activities, such as preventing or controlling disease and FDA regulation.
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In certain circumstances, regarding victims of abuse, neglect, or domestic violence.
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For purposes of legally authorized health oversight activities, such as audits and investigations.
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In a judicial or administrative proceeding if the request for information is through an order from a court or administrative tribunal.
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For law enforcement purposes (1) as required by law, (2) to identify and locate a suspect, fugitive, material witness, or missing person, (3) in response to a law enforcement official’s request for information about a victim or suspected victim of a crime, (4) to alert law enforcement of a person’s death if it is suspected that criminal activity caused the death, (5) when it is believed that PHI is evidence of a crime that occurred on a protected entity’s premises, (6) in a medical emergency when necessary to inform law enforcement about the commission and nature of a crime, the location of the crime/victims, and the perpetrator of the crime.
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To funeral directors and coroners or medical examiners to identify a deceased person, determine cause of death, and perform other functions authorized by law
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To facilitate organ donation and transplantation.
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For research purposes, under specific guidelines. More details here.
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To prevent or lessen serious and imminent threats to a person or the public.
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For essential government functions, such as the execution of a military mission, conducting intelligence/national security activities as authorized by law, providing protective services to the President, making medical suitability determinations for U.S. State Department employees, protecting the health and safety of inmates or employees in a correctional facility, and determining eligibility for/conducting enrollment in certain government benefit programs.
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To comply with workers’ compensation law and other programs providing benefits for work-related injuries or illnesses.
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Limited data set for the purposes for research, public health, or healthcare operations, providing that the recipient of the data enters into a data use agreement promising specified safeguards for the included PHI.
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A limited data set is protected health information that has had direct identifiers of individuals removed like their relatives, household members, and employers.
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Any additional reasons described in a Notice of Privacy Practices.
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Pennsylvania Bill of Rights for Patients. Title 55, Chapter 5100 of the Pennsylvania Code
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States the following rights for patients in PA:
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You have a right to be treated with dignity and respect.
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You shall retain all civil rights that have not been specifically restricted by court order.
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You have the right to unrestricted, private communication inside and outside the healthcare facility.
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You have the right to practice the religion of your choice or to abstain from religious practice.
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You have the right to keep personal possessions, unless they are determined to be contraband. The reasons and scope of restriction for any items being prohibited must be clearly defined, recorded, and explained.
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You have the right to handle your personal affairs.
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You have the right to participate in the development and review of your treatment plan.
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You have the right to receive treatment in the least restrictive setting necessary to accomplish treatment goals.
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You have the right to be discharged from the facility as soon as you no longer need care.
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You have the right not to be subjected to any harsh or unusual treatment.
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You have the right to be discharged from any facility if you have been involuntarily committed in accordance with civil court proceedings, are not receiving treatment, are not a danger to yourself or others, and can survive safely in the community.
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You have a right to be paid for any work you do which benefits the operation and maintenance of the healthcare facility.
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The No Surprises Act of 2022
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If you have insurance:
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The No Surprises Act is a federal law that applies to most types of health insurance and protects you from out-of-network medical bills, such as ER expenses and non-emergency, out-of-network care related to a visit to an in-network provider.
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If you have no insurance or are underinsured:
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Providers must give you a “good faith estimate” of what your care will cost. You can get this upon request and/or when you schedule treatment at least three days in advance. You will not receive an estimate during emergency care. You may be able to dispute your bill if it is $400+ the estimate you were provided.
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The Patient Protection and Affordable Care Act (ACA) of 2010
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Three primary goals:
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Make health insurance more affordable and available to more people.
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Expand the Medicaid program (varies by state)
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Support innovative medical care delivery methods designed to lower the cost of healthcare.
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What if I believe my patient rights have been violated?
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By law, any person who believes a covered entity is not complying with the Privacy Rule may file a paper or electronic complaint with the Office for Civil Rights. Complaints should be made within 180 days of when the affected individual knew or should have known that misconduct occurred.
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Many hospitals have patient advocates that can provide resources to assist you. Additionally, your local government may be able to assist you in filing a complaint and accessing resources.
Does HIPAA require my doctor to send my medical records to the government?
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No. The Privacy Rule does not require any covered entity to send medical information to the government or a government database. It also does not allow any new government access to medical information with the exception of allowing the Department of Health and Human Services Office for Civil Rights to investigate complaints that privacy rights have been violated.
Will HIPAA make it easier for law enforcement to get my medical information?
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No. The Privacy Rule does not expand law enforcement access to PHI. The type of information that covered entities may disclose to law enforcement without a warrant or other approved access, is limited by the Privacy Rule. Circumstances in which a covered entity may disclose PHI to law enforcement without the individual’s signed consent are outlined here.
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A recent agreement between the Centers for Medicare and Medicaid Services (CMS) under the Department of Health and Human Services (HHS) and the Department for Homeland Security (DHS) has given Immigration and Customs Enforcement (ICE) officials access to the personal data of Medicaid enrollees, allegedly including names, birth dates, social security numbers, home addresses, and ethnicities. Although the Medicaid program is not available in full to people without legal status in the U.S., or even those with certain legal residency statuses, federal law requires all states to offer emergency Medicaid to anyone, including non-U.S. citizens. CMS and DHS have allegedly made this agreement in an attempt to ensure that only “law-abiding Americans” are receiving benefits. ICE officials are not allowed to download any data and can only access the data Monday through Friday, from 9 am and 5 pm, until September 9th. California Attorney General Rob Bonta is leading a lawsuit along with co-plaintiffs Arizona, Colorado, Connecticut, Delaware, Hawaii, Illinois, Maine, Maryland, Massachusetts, Michigan, Minnesota, Nevada, New Jersey, New Mexico, New York, Oregon, Rhode Island, Vermont, and Washington against co-defendants Robert F. Kennedy Jr. as the Secretary of HHS and Kristi Noem as the Secretary of DHS. The plaintiffs are hoping to stop the “president’s efforts to pull personal, private, and unrelated health data to create a mass deportation machine” and preserve individuals’ ability to seek essential medical care. They argue that the actions of HHS and DHS violate HIPAA and federal health privacy protection laws. There is an initial hearing scheduled for August, 7th, 2025.
May an individual request that a covered entity restrict how it uses their PHI?
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Yes. HIPAA requires covered entities to allow individuals to request restrictions on the use of their PHI for treatment, payment, and health care operations. The Privacy Rule also grants individuals the right to request restrictions for other uses, such as disclosure made to family members or other persons involved in their care. Although covered entities are required to allow individuals to request restrictions, they are not always required to abide by the requests. In some cases, for example, a provider may not agree to restrict disclosures that will obstruct the delivery of quality healthcare or efficient payment for healthcare.
References
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https://www.hhs.gov/hipaa/for-professionals/privacy/laws-regulations/index.html
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https://code-medical-ethics.ama-assn.org/ethics-opinions/privacy-health-care
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https://www.cms.gov/medical-bill-rights/know-your-rights/no-insurance#get-a-good-faith-estimate
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https://www.nbcnews.com/news/latino/ice-gets-access-medicaid-personal-data-rcna219462
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https://apnews.com/article/immigration-medicaid-trump-ice-ab9c2267ce596089410387bfcb40eeb7
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https://apnews.com/article/trump-medicaid-immigrant-california-161f7e1b9087512d674258f32f822878
Last Updated by PHC 9/1/25