Notice of Privacy Practices (HIPAA)

This Notice of Privacy Practices explains how St. Jude Children’s Research Hospital, its medical staff members, employees, volunteers, and clinics may use and provide your Protected Health Information (called PHI) to others for treatment, payment, and health care “operations” as described below, and for other purposes allowed or required by law.

I. Our Responsibilities:

St. Jude takes the privacy of your child’s (your) health information seriously. We are required by law to keep your health information private and provide you with this Notice of Privacy Practices. We will act according to the terms of this Notice. We reserve the right to change this Notice of Privacy Practices and to make any new practices effective for all Protected Health Information that we keep. Any changes made to the Notice of Privacy Practices will be posted in the Patient Registration area, posted on our website (www.stjude.org) and will be available for you to pick-up at your next appointment. St. Jude is required to notify you if your unsecured protected health information  is breached.

II. What is "protected health information" (PHI)?

Protected Health Information (PHI) is information about a patient’s age, race, sex, and other personal health information that may identify the patient. The information relates to the patient’s physical or mental health in the past, present, or future, and to the care, treatment, and services needed by a patient because of his or her health.

III. What does "health care operations" include?

“Health care operations” includes activities such as:

• discussions between hospital staff and other health care providers;
• evaluating and improving quality;
• making travel arrangements to and from St. Jude;
• arranging temporary housing; reviewing the skills, competence, and performance of health care staff;
• training future health care staff;
• dealing with insurance companies;
• carrying out medical reviews and auditing;
• collecting and studying information that could be used in legal cases; and
• managing business functions.

IV. How is medical information used and disclosed?

St. Jude uses and discloses medical records to record health information, to plan care and treatment, and to carry out routine health care functions. St. Jude uses and discloses PHI for treatment, payment, and health care operations. For example, your insurance company may need us to give them procedure and diagnosis information to bill for patient treatment we provide. Other health care providers or health plans reviewing your records must follow the same federal privacy laws and rules that St. Jude is required to follow. 

Patient records also greatly help our researchers find the best possible treatment for diseases and medical conditions. All St. Jude researchers must follow the  same rules and laws that other health care providers have to follow to keep patient information private. Details that may identify patients will not be disclosed for research purposes to anyone outside of St. Jude without written permission from the patient or the patient’s parent or legal guardian.

V. Examples of how PHI may be used or disclosed for treatment, payment or health care operations

PHI may be used to show that a patient needs certain care, treatment, and services (such as lab tests, prescriptions, treatment plans, and research study requirements).

• We will use medical information to plan treatment.
• We may disclose Protected Health Information to another provider for treatment (such as, referring doctors, specialists, and providers at the St. Jude Domestic Affiliate Clinics).
• We may send claims to your insurance company containing medical information. If you pay for a service or health care item out-of-pocket in full, you can ask us not to share that information for the purpose of payment or our operations with your health insurer. However, please note St. Jude does not take action to collect from patients or their families.
• We might also contact your insurance company’s utilization review department to receive precertification (approval for treatment in advance).
• We may use the emergency contact information you gave us to contact you if the address we have on record is no longer correct.
• We may use information to schedule travel to and from St. Jude.
• We may use information to provide temporary housing at places like Ronald McDonald House, Target House, Tri Delta Place, Parcels @ Concourse, or local hotels. 
• The patient’s name, home address, other contact information, age, gender, date of birth, dates of health care, department of service, treating physician, outcome information, and health insurance status may be given to ALSAC, a charitable organization with the sole purpose of raising funds for St. Jude. Before any more information is given to ALSAC, you will be asked to sign another consent document known as an Authorization Form. Also, you have the right to quit receiving such fundraising communications.

VI. Why do I have to sign a consent form?

When you sign the Consent for Release of Information, you are giving St. Jude permission to use and disclose (provide to others) Protected Health Information for treatment, payment, and health care operations, as described above. This permission does not include psychotherapy notes (defined in Section VII below), psychosocial information (defined in Section VIII below), alcoholism and drug abuse treatment records, marketing, sale of protected health information, and other privileged categories of information, all of which require a separate permission. You will need to sign a separate consent form to have Protected Health Information given out for any reason other than treatment, payment, or health care operations or as required or permitted by law.

VII. What are psychotherapy notes?

Psychotherapy notes are notes recorded (in any form) by a mental health professional for the purpose of studying a conversation that took place during a private counseling session. This session can be with a single person, a group, or a family. Conversation notes from a counseling session are separated from the rest of the patient’s medical

record. Psychotherapy notes do not include:

• notes about which medicines you are taking or how those medicines affect you;
• the start and stop times of counseling sessions;
• the types of treatment you are given; how often treatments are given;
• the results of clinical tests; and
• any summary of the following items: diagnosis, functional state, the treatment plan, symptoms, expected outcome, and progress to date.

VIII. What is psychosocial information?

Psychosocial information is information given to your social worker about your family’s social history and counseling services you have received.

IX. What is marketing?

Marketing is communication about a product or service that encourages those who receive the information to purchase or use the product or service.

X. Why do I have to sign a separate permission form?

To provide patient Protected Health Information to other people for any reason other than treatment, payment, and health care operations (described above) or as required or permitted by law, we must have a permission form know as an Authorization Form signed by the patient or the patient’s parent or legal guardian. This form clearly explains

how they wish the information to be used and disclosed. The following are some examples of information that require separate permission before we can release it: 

• Psychotherapy notes
• Information and photographs shared with ALSAC for its fundraising and public relations activities
• Information used in scientific and educational publications, presentations, and materials related to the work at St. Jude
• Information shared with other clinical and scientific cooperative groups that St. Jude works with in carrying out its mission to advance cures, and means of prevention, for pediatric catastrophic diseases through research and treatment

XI. Can I change my mind and withdraw permission for St. Jude to disclose PHI?

You may change your mind and withdraw (revoke) permission, but we cannot take back information that has been released up to that point. Permission cannot be withdrawn if:

1. the information is needed to maintain the integrity of the research study, or
2. if the permission was originally given to obtain insurance coverage.

All requests to withdraw permission for uses and disclosures of PHI should be made in writing. The request should be submitted to Patient Registration, which will forward this information to the Privacy Officer and the Director of Health Information Management.

XII. Being listed in the hospital directory

St. Jude may include certain limited information about the patient in our hospital directory while the patient is in the hospital. This information may include the patient’s name, location in the hospital, general condition (for example, good, fair, etc.), and religion. The hospital location may also include directory information for Target House, Ronald McDonald House, Tri-Delta Place, Parcels @ Concourse, or local hotels. The hospital may give this information to members of the clergy. The hospital may give this information (except your religion) to other people who ask for the patient by name. For example, if someone calls St. Jude and asks for the patient by name, St. Jude will attempt to connect the caller to the patient’s hospital room telephone or we may give out the main telephone number for the Ronald McDonald House, Target House, Tri-Delta Place, Parcels @ Concourse, or local hotel. If you do not wish to be in the Hospital Directory, please inform Patient Registration and ask them for a Directory Opt-Out Form.

XIII. Sharing information with St. Jude business associates

Some services at St. Jude are provided through contracts with business associates or business partners. Examples include billing transcription, scheduling travel to or from St. Jude, and assigning temporary housing. When these services are contracted, we may disclose the minimum amount of your child’s (your) health information to the business partner that they need to perform the job we have hired them to do. To protect your child’s (your) health information, we legally require our business associates and business partners to follow the same privacy laws that St. Jude must follow. 

XIV. Electronic medical information sharing

You have the right to request that your or your child’s electronic health information be sent to another person or organization through an application programming interface (API). APIs are computer coding mechanisms that permit two or more computer programs or apps to share information.

St. Jude is required to comply with patient requests to send information through an API with some exceptions. Health information transmitted through an API at your request will no longer be controlled and protected by St. Jude. It will no longer be subject to the protections and rights outlined in this St. Jude Notice of Privacy Practices. Also, it may no longer be subject to the same laws and policies regarding its confidentiality, security, privacy, use, or disclosure.

Before you ask for information to be sent through an API, the staff recommends you confirm the confidentiality, security, and privacy protections used by the recipient. If you ask St. Jude to send your or your child’s information through an API, you do so at your own risk.

XV. When is my consent not required?

The law requires that some information may be disclosed without your permission during the following times:

• In an emergency
• When communication or language is very limited
• When required by law
• To the Secretary of Health and Human Services for compliance and enforcement
• When there are risks to public health
• To conduct health oversight activities
• To find out if a research study might be useful
• To report suspected child abuse or neglect
• To certain government agencies who monitor activity
• In connection with court or government cases
• For law enforcement purposes
• To coroners and funeral directors and for organ donation
• If health or safety is seriously threatened

XVI. Your privacy rights

The following explains your rights with respect to your child’s (your) Protected Health Information (called PHI) and a short description of how you may use these rights.

1. You have the right to review and to be given a copy of your child's (your) health information.

The following explains your rights with respect to your child’s (your) Protected Health Information (called PHI) and a short description of how you may use these rights. 1. You have the right to review and to be given a copy of your child’s (your) health information. This means that except as explained below, you may review and get a copy of your  child’s (your) PHI that is contained in a “designated record set” as long as we keep the PHI. A designated record set contains medical and  billing records and any other records that St. Jude uses to make decisions about your child’s (your) health care. You may not read or be given a copy of psychotherapy notes; information collected for use in a civil,  criminal, or administrative action, or court case; and certain PHI that is protected by law. In some situations, you may have the right to have this decision reviewed. You also have the right to review and to be given a copy of your health information from HIPAA-covered labs. You can typically expect records within the time period required by law, though at times, an extension may be required. Please contact the Health Information Management Services (HIMS) Department if you have questions about access to your child’s (your) health information and please see Section XVIII below to request a copy of your records. If needed and at your request, St. Jude may provide an electronic copy of your child’s (your) record if St. Jude is able to do so. A fee may be charged for requesting a copy of your health or medical records.

2. You have the right to request that access to your child's (your) health information be limited.

This means you may ask us to restrict or limit the medical information we use or disclose for treatment, payment, or health care operations (described above). St. Jude is not required to agree to a restriction you ask for unless it involves disclosure to a health plan for which you have paid for the service in full. But, please note St. Jude does n ot attempt to collect from patients or their families. We will not ask you to self-pay for care. We will tell you if we reject your request. If we do agree to the requested restriction, we will comply with that restriction unless it must be violated to provide emergency treatment. You may request a restriction by contacting the St. Jude Privacy Officer.

3. You have the right to request to receive private communications in another way or at other locations.

We will agree to reasonable requests. To carry out the request, we may also ask you for another address or another way to contact you, for example, mailing to a post office box. We will not ask you to explain why you are making the request. Requests must be made in writing to Patient Registration.

4. You have the right to request changes to your child's (your) health information.

This means you may ask for changes to be made (amended) in PHI about your child (you) in a designated record set for as long as we keep this information. In certain cases, we may deny your request for a change. If we deny your request, you have the right to file a statement with the St. Jude Privacy Officer, stating that you disagree. We may prepare a response to your statement and will provide you with a copy of this response. If you wish to change your child’s (your) PHI, please contact the St. Jude Privacy Officer. Requests for changes must be in writing.

5. You have the right to receive a record of when your child's (your) health information has been disclosed by St. Jude.

You have the right to request a record (accounting) of when St. Jude has disclosed your child’s (your) PHI. This right applies to any time St. Jude discloses your child’s (your) PHI for purposes other than treatment, payment, or health care operations as described in this Privacy Notice. We are also not required to account for information releases:

• that you requested,
• that you agreed to by signing an Authorization Form,
• that are in our Hospital Directory,
• that are given to family or friends involved in your care, or
• certain other releases we are allowed to make without your permission.

The request for a record must be made in writing to the St. Jude Privacy Officer.

The request should state the time period for the list. Requests for records about St. Jude disclosures of your child’s (your) PHI may not be made for time periods of more than 6 years before the date of your request or it could be an shorter time period depending on what the law requires.

6. You have the right to receive a paper copy of this Notice of Privacy Practices.