What Should I Know About Medical Records, and How Do I Manage Them?
When you have been diagnosed with a form of mesothelioma, or you are seeing a health care provider due to symptoms associated with mesothelioma, it is essential to keep detailed medical records. While medical offices are required to retain medical records, you should be sure to maintain your own copies of your medical records, as well. State law governs the length of time that physician’s offices and hospitals are required to maintain patient records, so you should check the laws in your state if you need to obtain copies of your medical records from a doctor’s office or you need to get copies of medical records in a state where you lived previously. The important thing to keep in mind is that you should maintain your own patient file, either in hard copy or electronically, so that you will have the information you need when you see a new provider or receive treatment and need to provide additional information or details to your current health care provider. Anyone who is grappling with a life-threatening illness like mesothelioma will need to have accurate and detailed information about their own health care.
The following information clarifies what kinds of information is contained in medical records, and what rights you have as a patient when it comes to viewing and obtaining copies of your medical records. The following information also explains why you should maintain your own patient medical records, how you can obtain copies of your medical records, and what kinds of advance directives you should consider as you put together a file of your medical records.
What Are Medical Records?
A medical record is a health history, and it can contain a wide variety of information. Medical records typically include the following:
- Personal information about the patient, such as the patient’s birth date, gender, race, and ethnicity;
- Physical information about the patient, such as the patient’s weight and height;
- Known medical issues the patient has, including a family history of any known medical conditions;
- Patient’s medical history of mental health conditions, as well as a family history of known mental health conditions;
- Patient’s surgical history, including any surgeries the patient has had in the past;
- Patient’s history of hospitalization;
- Patient’s immunization record;
- Patient’s current and past medications, including information about the dosage of the drug and the reason for its use;
- Known allergies to medications and substances that could affect a patient’s health care;
- Test results, which may include MRI scans, X-rays, and laboratory or pathology tests; and
- Information about the patient’s health insurance.
All of this information is accessible by a patient when a patient requests the information. Some of the information may be contained in a patient portal or another electronic database to which the patient has access through a specific health care provider’s office. Yet even though your information may be contained within a patient portal, it is important to remember that you should keep all of this information in one place so that it can be easily accessed by you or by a family member you trust. You should know that, while psychologists and psychiatrists do keep detailed records from your visits, your accessible medical records do not include psychotherapy notes made by a provider. As such, notes a mental health provider makes during your discussions about a mesothelioma diagnosis, for example, are not available to you in the same way that other medical records can be accessed.
Why You Should Keep Your Own Copies of Your Medical Records
Many people do not keep copies of their own medical records, or they rely on their physician’s office or specialist’s office to maintain those patient records for them. Yet it is critical to keep your own copies of all of your medical records, whether you are healthy or dealing with a serious illness. In particular, if you either have symptoms of malignant mesothelioma and are seeking a diagnosis or you have been diagnosed with malignant mesothelioma, you will want to have copies of all of your medical records, including X-rays, laboratory tests, MRIs, blood test results, visits with physicians and specialists, surgeries, treatments and dates of treatment, hospital stays, and any other information pertaining to your care.
Although physician’s offices and hospitals must keep patient records for a specific period of time according to individual state laws, most of the information contained in a patient’s medical records is not easily accessible in a single location. Many of the records are solely maintained in the physician’s office or at the hospital, and electronic records are usually accessible through individual patient portals set up by each doctor or health care provider. As such, patients cannot usually log into a single portal or location to obtain full and complete information about all of their health care visits, diagnoses, and treatments. In order to keep a full file, it is important for patients to obtain their own copies of their medical records.
Even if you think you might be able to remember everything a doctor told you, and even if you keep written notes yourself after a visit with a health care provider, the information contained in medical records compiled by a health care provider often provide details that the patient will not otherwise have. In addition, it is easy to forget information when you are dealing with a devastating disease like malignant mesothelioma, which can make it difficult to focus on remembering specific details of a doctor’s visit or a proposed treatment plan. Rather than leaving that information to memory, you can get copies of your records and have them at your disposal.
If you need to move to another area, or you need to see a different specialist, you will be able to provide all of your medical records to that health care provider with ease. Having your medical records and sharing them with a new healthcare provider can help to ensure that your provider understands fully how you were diagnosed with mesothelioma and the types of treatments or care you have received to date. In addition, your medical records should give a full list of any medications you are taking, as well as any allergies you have, in order to prevent a serious or deadly medication error while you are seeking treatment and care after your malignant mesothelioma diagnosis.
How to Obtain Copies of Your Medical Records
In order to obtain copies of your medical records, you will typically need to contact each individual health care provider to make the request. When you are seeking all of your records pertaining to a malignant mesothelioma diagnosis and treatment plan, you will likely need to put in requests for your medical records through your primary care provider’s office, as well as through the offices or facilities of any specialists you have seen and any places where you have had tests conducted or treatments. In most situations, patients will obtain copies of these medical records by going through a specific medical records office, particularly for records being held by a larger health care facility or organization.
When you make a request for your medical records, you will need to sign a written release that will need to be dated, and you will likely need to pay a fee for each of the medical records you are requesting. While it might seem frustrating to have to pay for your medical records, you will be extremely glad to have all of this information in one place.
When you are making requests for your medical records, the request form might ask you to indicate or check a box to indicate which records you are specifically seeking. If you have the option to obtain all records on file, that is usually the option you should choose. If you need to indicate the exact records you want to obtain, it is important to seek any and all of the following:
- Full records from visits to the health care provider;
- All test results;
- All laboratory studies; and
- All X-ray, CT scan reports, and any other radiological imaging.
Most medical records can be provided to patients electronically. If you are going to store your medical records electronically once you receive them, it is critical to ensure that you are storing them in a secure location that is also backed up.
Patient Rights Under the Health Insurance Portability and Accountability Act of 1996 (HIPAA)
Can information about your mesothelioma diagnosis be shared with other health care providers? Can your family members gain access to information held in your medical records at a doctor’s office or at a hospital or treatment facility? These are some of the questions that mesothelioma patients have about their medical records. In terms of family access, creating your own file for your medical records can be helpful if you want to allow your children, your spouse, and other family members to have ready access to your information. There are also ways to give individuals access to your medical records under federal law.
Patients have rights under the Health Insurance Portability and Accountability Act of 1996 (HIPAA), which is a federal law that established “national standards to protect sensitive patient health information from being disclosed without the patient’s consent or knowledge.” This federal law has effect through the HIPAA Privacy Rule, which was issued by the U.S. Department of Health and Human Services (HHS). That Privacy Rule defines a patient’s “protected health information” and clarifies which entities are permitted by law to have access to a patient’s health records. The Privacy Rule allows patients to understand specifically how their medical records can be used and allows patients to have control in the sharing of their health information.
According to the U.S. Centers for Disease Control and Prevention (CDC), one of the primary aims of the Privacy Rule “is to ensure that individuals’ health information is properly protected while allowing the flow of health information needed to provide and promote high quality health care and to protect the public’s health and well-being.” Indeed, the CDC says, the “Privacy Rule strikes a balance that permits important uses of information while protecting the privacy of people who seek care and healing.”
How can your medical records be seen or used under HIPAA? Under the Privacy Rule, you (as a patient) and your personal representative have a right to access your medical records. Your healthcare provider, or your health insurer, can send copies of your medical records to other health care providers for the purposes of treatment or payment. Copies of your records can also be sent to other parties if you give permission. While physician’s offices and facilities may share information with other health care providers under HIPAA, it is important to understand that HIPAA does not require any doctor’s office or hospital to share your information. Accordingly, if you want to be certain that you can provide specific details in your medical records to other providers, you should maintain a full copy of your medical records. HIPAA does give patients the right to access their medical records.
Medical Records and Health Information Regulated by FERPA and State Law
In addition to HIPAA, the Family Educational Rights and Privacy Act (FERPA) also regulates certain information about patients and their health records. Depending upon where you live and receive treatment or medical care, state laws can also apply that concern the regulation and sharing of patient health information.
Your Medical Records and Advance Directives
When you are putting together a full and complete copy of your medical records, you should also ensure that you have copies of any advance directives in with the medical records you have obtained from your physician’s office or from the facility where you received treatment or care. Advance directives are typically governed by state law, but they are part of a larger class of tools and documents that allow for advance care planning, according to the National Institute on Aging. The terminology for specific advance directives may vary by state, but it is important to understand what these tools and documents do, why you should have them, and why they should be apart of your larger medical records file. To be clear, if you already have advance directives, you should include copies with your medical records. If you do not have advance directives, you should create them and should then include copies with your medical records.
Advance directives typically include:
- Living will, which is a document that allows you to indicate your preferences for receiving certain types of life-saving treatment or care in the event that you become incapaciated and cannot make these decisions on your own. The living will has nothing to do with leaving assets to loved ones, but rather spells out your medical wishes in the event you would need life support, for example. By creating a living will, you can ensure that your health care wishes are respected even if you cannot voice your wishes yourself. A living will can take the burden off of family members who would otherwise be tasked with making these extremely difficult decisions. You can revoke this document at any time as long as you are still able to do so in terms of legal capacity.
- Health care proxy (sometimes known as a health care power of attorney), which allows you to name another party to make health care decisions on your behalf if you become incapacitated and cannot make these decisions on your own. To be clear, this is a document in which you name someone you trust to make these decisions, and the document only takes effect if you become incapacitated and cannot voice your own medical decisions. Anyone you name in a health care power of attorney document, or who is designated as your chosen health care proxy, will only be able to make health care decisions for you if you cannot do so yourself. Many states require at least two physicians to indicate that the patient is incapacitated before a health care proxy can take over. You can revoke this document at any time as long as you still have the capacity to do so.
- Do Not Resuscitate (DNR), which is an order that tells any health care provider in a hospital or other facility that you do not want to be resuscitated. According to the NIH, a DNR expressly “tells medical staff in a hospital or nursing facility that you do not want them to try to return your heart to a normal rhythm if it stops or is beating unsustainably using CPR or other life-support measures.” You may also be able to create a “do not intubate” order, or a DNI, which tells a health care provider that you do not want to be intubated and “put on a breathing machine.” If you do not have a DNR or DNI in place, medical staff will attempt resuscitation and will intubate if necessary.
- Organ donation document, which indicates that you wish to have organs and/or tissue donated to a person who needs them when you pass away if your organs or tissue are healthy. Organ and tissue donation for these purposes may not be possible for a patient suffering from malignant mesothelioma.
If you do not have advance directives, you should seek legal help to get these materials in order.