Both the HIPAA Privacy Rule and Illinois law give you rights to your medical record. The HIPAA Privacy Rule sets standards that apply to the records of health care providers across the nation. Illinois law sets standards for the records of doctors, hospitals and other health care providers within the state. Most health care providers have to follow both the HIPAA Privacy Rule and Illinois law. If the HIPAA Privacy Rule has a standard that is different from one in Illinois law, your health care provider must follow the law that is the most protective of your rights.
Summary of Your Rights
In Illinois you have the right to:
- See and get a copy of your medical record.
Your health care provider usually must let you see your medical record or give you a copy of it within 30 days after they receive your request.
As of January 2007, your health care provider is allowed to charge you between 29¢ and 86¢ per page for paper copies, depending on the number of pages copied. They can charge you $1.43 per page for copies made from microfilm. These amounts are adjusted annually. You can also be charged for postage.
- Amend your medical record by having information added to it.
You have the right to have information added to your medical record to make it more complete or accurate. This right is called the right to amend your record.
- File a complaint.
You have the right to file a complaint with the Office for Civil Rights, U.S. Department of Health and Human Services if you believe your health care provider has violated your right to see, get a copy of, or amend your medical record. You can also file a complaint with the state agency that regulates your health care provider.
- Sue in state court to get your medical record.
Under Illinois law, you have the right to sue in Illinois Circuit Court to obtain your medical record.
You can learn more about these rights in the following sections of this guide.
Who Has to Follow These Rules?
Most Illinois health care providers (such as doctors and hospitals) must follow both the HIPAA Privacy Rule and state laws that give patients rights in their medical records.
There are some health care providers, however, that do not have to follow the HIPAA Privacy Rule. The HIPAA Privacy Rule only covers health care providers that use computers to send health information for certain administrative or financial purposes (such as filing claims for insurance).
Sometimes Ashley goes to a doctor at a free clinic for medical treatment. The doctor does not accept private insurance, Medicaid, or Medicare. The doctor does not file any insurance claims. Ashley’s doctor probably does not have to follow the HIPAA Privacy Rule. This is because the doctor does not appear to send health information for the types of administrative or financial purposes that would make her a covered health care provider under the HIPAA Privacy Rule.
If you have questions about whether your health care provider must follow the federal HIPAA Privacy Rule, you can contact the Office for Civil Rights, U.S. Department of Health and Human Services (OCR), the agency that is in charge of enforcing the HIPAA Privacy Rule. Section 4 of this guide lists contact information for OCR.
What if my provider does not have to follow HIPAA?
Even if your provider does not have to follow the HIPAA Privacy Rule, they still have to follow Illinois laws that give you rights to your medical record. Section 6 lists some resources that summarize these state laws.
This guide, however, only explains getting your medical record from Illinois providers who have to follow the HIPAA Privacy Rule.
What Records Do I Have the Right to Get and Amend?
You have the right to see and get a copy of your medical record. You also have the right to amend your medical record by having information added to it to make it more complete or accurate. This right is called the right to amend your record. (This guide will call these rights the right to “get and amend.")
Your medical record includes such things as:
- Information that identifies you, such as your name and Social Security number.
- Information that you tell your doctor, such as:
- Your medical history.
- How you feel at the time of your visit.
- Your family health history.
- The results of your examination.
- Test results.
- Treatment received in a hospital.
- Medicine prescribed.
- Other information about things that can affect your health or health care.
Who owns my medical record?
Under Illinois law, your health care provider owns the actual medical record. For example, if your provider maintains paper medical records, they own and have the right to keep the original record. You only have the right to see and get a copy of it.
My provider makes personal notes about patients. Do I have a right to get these notes?
Probably. You have the right to get a provider’s personal notes about you if the notes are used to make decisions about you.
Michael’s doctor writes notes about her personal impressions of patients in their medical records. She uses these notes to help her treat her patients. Michael’s doctor wrote a note in his medical record that says she suspects that Michael is exaggerating his complaints about his health and that his problems are “all in his head.” If Michael requests his entire medical record, the doctor must let him get a copy of this note.
What happens if my medical record has information in it that came from a different health care provider?
Generally, if a health care provider has the medical information that you request, they must give it to you. It does not matter who originally put the information in the record.
Your right to amend this information may be limited, though. For more information about how to amend information in your record you can read Section 3 of this guide.
My health care provider collected information about me because they think I might sue them. Do I have the right to get this information?
Not under these particular laws. You do not have the right under the HIPAA Privacy Rule to get information about you that has been gathered for potential use in a law suit or similar proceeding.
Roberto complained to his hospital that he was very unhappy with his treatment. Believing that Roberto is going to sue, the hospital lawyer interviews doctors and nurses involved with Roberto’s treatment to get their version of what happened. Roberto requests a copy of all medical information that the hospital has about his treatment. The hospital must give Roberto a copy of his medical record, including test results and entries made while Roberto was in the hospital. However, the hospital does not have to give Roberto a copy of the interview notes they took for potential use in the law suit.
There are other rules for getting information in law suits.
Do I have the right to get and amend records about my mental health treatment?
Maybe. The rules for when you can get and amend your records about mental health treatment can be different. For example, psychotherapy notes are treated differently than other records under the HIPAA Privacy Rule. Because the rules for mental health records can be different they are not discussed in this guide. You can find some resources that explain your rights in these types of records in Section 6.
Who Has the Right to Get and Amend My Medical Record?
You have the right to see and get a copy of medical records that are about you. You also have the right to amend medical records that are about you by having information added to them. (This guide calls these rights the right to “get and amend” your medical record.) If there is someone who acts as your personal representative, they usually have the right to get and amend your record on your behalf. Generally, a personal representative is a person who has the right to make health care decisions on your behalf.
Do I have the right to get and amend my minor child’s medical record?
Usually, yes. As a parent or guardian, you are generally considered to be the personal representative of your minor child. As a personal representative, you generally have the right to get and amend your child’s medical record. In Illinois, parents have these rights when a child is younger than 18 years old.
As a parent, do I always have the right to get and amend my child’s medical record?
No. A parent does not always have the right to get and amend a child’s medical record. For example, a provider may reasonably believe that a parent is abusing or neglecting a minor child. When this is the case, the provider does not have to treat the parent as the personal representative of the minor child. This means the provider does not have to give the parent access to the child’s medical record.
Some other situations where parents do not have the right to get and amend their child’s medical records are discussed in the following questions and answers.
Who has the right to get and amend my child’s medical record once she turns 18?
Once your child turns 18, your child has the right to see, get a copy of, and amend her own record. You usually no longer have the right to get and amend your adult child’s record just because you are her parent.
I am under 18, but I’m considered emancipated under Illinois law. Who has the right to get and amend my medical record?
You do. If you are under 18, but are considered emancipated under Illinois law, you have the right to get and amend your own medical record. Your parents do not have the right to get your medical record.
I am a minor. I am not emancipated but I have the right to consent to certain kinds of medical treatment without my parents’ permission. Who has the right to get and amend medical records related to this treatment?
It depends. In Illinois, even though you are a minor you can consent to certain kinds of medical treatment without the permission of your parents. When you consent to such treatment, you have the right to get and amend your own medical record related to that treatment. The HIPAA Privacy Rule lets state law determine whether your parents also have access rights to information about this treatment.
For example, in Illinois, a minor 12 years or older may consent to medical care for the diagnosis or treatment of sexually transmitted disease. The minor has the right to get and amend information related to this treatment. A health care provider may use their professional judgment to decide if the minor’s parents also should be informed about the minor’s treatment for sexually transmitted disease.
Jason is 16 and believes he may have herpes, a sexually transmitted disease. Jason gets treatment for herpes. Jason’s mother later asks for Jason’s entire medical record. It is up to the doctor to decide whether to give Jason’s mother the information about Jason’s treatment for a sexually transmitted disease.
The rules may be different when you, as a minor, obtain treatment for other medical conditions without parental consent.
If you have questions or concerns about whether your parents will have access to your medical information, you should talk to your health care provider.
I have a health care power of attorney for my mother. Do I have the right to get and amend her medical records?
Yes. If you have your mother’s health care power of attorney, you generally have the right to get and amend her medical records that are relevant to making health care decisions on her behalf. You have these rights while the power of attorney is in effect.
Maria’s mother signed a health care power of attorney form. If Maria’s mother is not able to make decisions about her health care, this form gives Maria the power to make such decisions. Maria’s mother was in a bad accident and is not able to make decisions about her health care. Maria now has the right to make decisions about her mother’s health care. Maria also as the right to get and amend the medical records that are relevant to making decisions about her mother’s health care.
Maria is curious about the time her mother had a miscarriage. Maria wants to look at these old medical records. Maria does not have the right to get and amend these old medical records because the records have nothing to do with her mother’s current condition or treatment.
My father recently died. Do I have the right to see and get a copy of his medical record?
Maybe. You do not automatically have the right to see a deceased person’s medical records, even if you are a close relative. In Illinois, you have the right to get and amend a deceased person’s medical records if you are the executor, administrator, or other representative of their estate.
How Long Does My Provider Have to Keep My Medical Record?
Illinois law may require your health care provider to keep your record for a certain period of time. For example, under Illinois law, hospitals must keep medical records at least 10 years. There is no specific rule for how long doctors in Illinois must keep medical records.
You have the right to see, get a copy of, and amend your medical record for as long as your health care provider has it.
