The Importance of Self-Advocacy on Your Infertility Journey
How do you make sense of something as overwhelming and mysterious as infertility?
The Importance of Self-Advocacy on Your Infertility Journey
For most of us, there usually isn’t a single moment where our reproductive endocrinologist solves the equation like Dr. Gregory House from the TV show House. Instead, our journeys are often filled with recurring failures, unanswered questions, and countless appointments all in the search of the right combination of hormones, drugs, and luck.
I often find that patient advocacy journeys evolve over time and often are brought upon by and informed by trauma and failure. With the diagnosis of infertility, every patient eventually finds the general numbers the CDC so diligently collects and with these numbers, I found comfort and naivety. I thought my own IVF journey would be 1 or 2 rounds; after all, that is what I thought the numbers showed.
But for many of us, that is not the case. And after repeated failure, the search for answers and ways to make the journey a little easier begins. For a lot of patients, this means taking better notes, asking more questions, and beginning to research the science behind infertility treatment so we can try to take back some semblance of control in an overall uncontrollable situation.
Something intuitively activates where we feel like we need to get more involved in order to impact the outcome and improve our chance of success. And this intuition is correct. 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 using apps which are designed to help you put everything in one place and connect you with tools you need to become a more empowered advocate for your own care.
Understanding Your Rights as a Patient
Like in business, in order to make the best decisions, you need to have access to as much information as possible. For fertility patients, this means having and understanding your health records and any insurance/ billing information. It is important to know your rights as a patient and the process for getting your health information from your doctors. As a patient, you have the right to access your health information under the Health Insurance Portability and Accountability Act (HIPAA). 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. This information includes medical records, lab results, and other health information related to your care.
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. This means you have the legal right to get your information sent to you when you want it. Next time a doctor tells you they cannot send you something you ask for because of HIPAA, you can point them to guidance and ask them to provide you with the information you want by the means you request.
What to do with the information when you have it?
Getting and using your information is not meant to supplant your doctor’s role or have you second guess everything they do. Instead, becoming a better self-advocate for your care amplifies the doctor patient relationship by enhancing communication and making sure you are on the same page. Studies have shown that patients that access their health information have a perceived enhanced communication with their doctors and health team, better appointment recall, and more prepared for upcoming appointments.
With access to your information, you can start to review information to make sure it is correct. One study found that 1 in 5 patients who read a clinical note in their records reported finding a mistake and 40% perceived the mistake as serious. If you do find something that is wrong, you have the legal right under HIPAA to ask for a correction from your doctor and it is important to do so. Doctors can only make decisions based on the information they have, so it is important to know it is correct.
Access to your information can also help you ask questions to your care team to help ensure you are confident in understanding what is going on, why decisions are made, and what happens next. We did not go to medical school for years and it is ok to acknowledge that we do not know everything. However, it is important that we feel comfortable and confident with the information we have. Looking at your test results, medication schedule and dosage, protocol, and care pathway and writing down questions you may have is a great way to start to ensure you are confident in your care.
Having your medical records readily available can help your healthcare providers make informed decisions about your care, avoid redundant testing, and reduce the likelihood of medical errors. It can help you track your progress and monitor changes in your health over time, giving you and your doctor a better understanding of what is working and what is not.
Tracking and organizing your information also can help you save time and money. Infertility care is often not covered by insurance, and even if you do have coverage, odds are it is not comprehensive and you still face high amounts of out of pocket costs. Keeping everything organized and accessible can help you better understand your benefits, keep a better budget, and even save you money during tax season.
Infertility can be an incredibly isolating experience and we often feel like we are left to fend for ourselves. However, by starting to become better self-advocates for our care and with a little help from those who have been through this before, you can start to take back control of your fertility journey and feel more confident in your care.
References:
JAMA Network Open. (2020). Racial and Ethnic Disparities in Outcomes Among Patients With COVID-19 [Abstract]. JAMA Network Open, 3(9), e2018699. https://doi.org/10.1001/jamanetworkopen.2020.18699
CDC National Center for Chronic Disease Prevention and Health Promotion. (n.d.). Assisted Reproductive Technology (ART) Clinic Information: National Overview. Retrieved from https://nccd.cdc.gov/drh_art/rdPage.aspx?rdReport=DRH_ART.ClinicInfo&rdRequestForward=True&ClinicId=9999&ShowNational=1
AHIMA Foundation. (2021, October). Understanding Access and Use of Health Information in America. Retrieved from https://ahimafoundation.org/media/ngfbggsk/oct2021_understanding_access_use_health_information_america_ahima_foundation.pdf
American Society of Clinical Oncology. (2021). Optimal Treatment Strategies for Pancreatic Neuroendocrine Tumors: An Overview and Update [Abstract]. Journal of Oncology Practice, 17(12), e1406-e1423. https://doi.org/10.1200/OP.21.00763
Grain Fertility. (n.d.). Patient Advocate. Retrieved from https://www.grainfertility.com/post/patient_advocate
U.S. Department of Health & Human Services. (n.d.). Health Information Privacy. Retrieved from https://www.hhs.gov/hipaa/index.html
Sarasohn-Kahn, J., & Kreps, G. (2013). The Complex World of Health Data: Understanding HIPAA and Its Impact on Health Data Privacy. Journal of Medical Internet Research, 15(3), e65. https://doi.org/10.2196/jmir.2236
Medical Disclaimer:
The information provided in this blog is intended for general informational purposes only and should not be considered as a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your healthcare provider or qualified medical professional with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read in this blog.