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Preparing for Fertility Treatment: Becoming a Patient Advocate

Fertility treatment is incredibly hard and takes its toll on your emotionally and financially. It is important to stay organized during your treatment and learn your rights as a patient so you can become the best advocate for yourself and be an equal partner in your care.

Fertility consultation
Becoming a patient advocate can make you an equal partner in your care

Studies show that patients who are active participants in their care, access their records, and communicate with their doctors have better perceived outcomes, are more satisfied with their care, and can become key stakeholders in the development of better care delivery.

As a patient undergoing fertility treatment, you know how hard it can be to access and find your complete medical history. You want to make sure your OB/GYN and your Reproductive Endocrinologist both know what is going on, but you are not sure they are talking. You can help yourself by becoming a better patient advocate and drive this information sharing through access to your records, enshrined in the law, and tools like Grain Fertility.

But what are your rights as a patient and how do you get your health records to become a patient advocate for yourself? As a patient, you have the right to access your health information under the Health Insurance Portability and Accountability Act (HIPAA). This includes medical records, lab results, and other health information.

As a way to help fertility patients, we are drafting a two part blog series to discuss in depth your rights under HIPAA and newly created Information Blocking regulations, steps you can take to access your health information, and how Grain Fertility can help you once you get your information. Part 1 will go into detail about your rights as a patient and the steps for accessing your information from your doctor.

HIPAA and Your Rights As a Patient

HIPAA is a federal law that protects the privacy and security of patient health information. It gives patients the right to access their health information, as well as the right to request corrections to that information if it is incorrect. HIPAA also requires healthcare providers and other covered entities to provide patients with a notice of privacy practices that outlines how their health information is used and disclosed.

Under HIPAA, patients have the right to:

  • Access their health information: This includes medical records, lab results, and other health information. Patients can request access to this information in various forms, including paper records, electronic records, and even verbal communication.

  • Request corrections to their health information: If patients find inaccuracies in their health records, they can request that the information be corrected.

  • Receive a notice of privacy practices: Healthcare providers and other covered entities must provide patients with a notice of privacy practices that outlines how their health information is used and disclosed.

We often hear from patients that doctors tell them they are not allowed to email information to a patient due to HIPAA if the patient requests. Unfortunately, this is a common misconception of the rule.

HIPAA regulations specifically say an individual has the right under the Privacy Rule to request and have a covered health care provider communicate with him or her by alternative means or at alternative locations, if reasonable

Next time a doctor tells you this, you can point them to guidance and ask them to provide you with the information you want by the means you request.

HIPAA not only gives you as a patient the right to access your information, it also gives you the ability to file a complaint with a branch of the federal government called The Office of Civil Rights under the Department of Health and Human Services. If you believe a doctor or clinic is wrongly withholding your health information, you can report them here.

Information Blocking Regulations

In addition to HIPAA, there are newly created Information Blocking regulations that also give patients the right to access their health information electronically.

The regulations, which went into effect in April 2021, were designed to prevent healthcare providers and other entities from blocking or delaying patient access to their health information.

Under the Information Blocking regulations, healthcare providers and other covered entities are required to:

  • Share electronic health information with patients: Providers must provide electronic health information in a format that is easily accessible and shareable with patients.

  • Respond to patient requests for access to their health information: Providers must respond to requests for access to health information within a certain timeframe, usually within 30 days.

  • Not engage in practices that block patient access to their health information: Providers are prohibited from interfering with a patient's access to their health information, such as by charging excessive fees or delaying access.

These regulations are designed to not only help patients get access to their information electronically, but to help patients get their information in the most useful format. A 200 page PDF is not very helpful to you or your doctor. Instead, these new rules will allow applications like Grain Fertility to develop alternative methods to securely access, store, and let you see your information in easy to understand ways.

Much like HIPAA, the Information Blocking regulations give patients the ability to report doctors, hospitals, clinics, and others that do not give patients access to their health information. You can find out more about how to report these information blockers here.

Steps for Access Your Health Information

Now that you are empowered with a basic understanding of your rights as a patient and want to access your health information, there are several steps you can take.

Contact your healthcare provider:

Your healthcare provider should be able to provide you with a copy of your medical records. You may need to submit a written request and provide identification. We recommend you do this with all of your doctors.

We often hear about important information being left out of a patient’s medical history, some of which can be very important to helping your reproductive endocrinologist understand what may be the cause of your fertility issues.

Check if your provider has an online patient portal:

Many healthcare providers now have online patient portals that allow you to access your health information online. Some of these portals will let you download summaries or your entire record directly from the portal. If this is the case, we recommend doing so and saving them in a secure location, like Grain Fertility’s Medical Record feature.

Submit a request for access to your health information:

If your healthcare provider does not have an online portal or you prefer to receive a physical copy of your records, you can submit a written request for access to your health information. You can use a template form, such as this one, or create your own request, but your request should include specific details such as your name, contact information, and the information you are requesting.

Follow up on your request:

If you do not receive a response to your request within the timeframe specified by the provider or if you have any issues accessing your health information, follow up with your provider. Often, offices are simply busy and understaffed, and following up will help you get what you need.

Stay Tuned for Part II

In Part 2 of our series, we will provide fertility patients with information about the benefits of accessing and using their health information and provide specific information about the capabilities of Grain Fertility and how to maximize the use of our tools. You can sign up for updates from Grain Fertility on our homepage to make sure you do not miss any resources or content to help you on your fertility journey.


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