Becoming Your Own Patient Advocate

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Patients have been becoming more and more involved in their health over the past few years. Gone are the days when the doctor’s word was final – with technology at our hands, we are more educated and, thus, more engaged in the treatments or medicines we receive, as well as how we want to be treated. By taking control of our health and becoming a self-advocate, we are becoming more confident: we know what is happening, and why, and have an equal say in the decisions that are made. 

Self- advocacy, in a medical context, means “to take an active role in your diagnosis and treatment plan. It means you understand your diagnosis, have considered the risks and benefits of treatment options, and choose a treatment that fits best for you as an individual.”2Self-advocacy, also referred to as participatory medicine, emphasizes “working together with your doctor as a team to come up with the best treatment plan for you; a treatment plan which is more satisfying for your doctor as well as it will better fit your specific needs for the best care possible.”

Why should you take control?

There are a number of reasons for why someone might want to become their own medical advocate. For some, they might feel less anxious if they have more control overseeing their health, whereas others may feel that becoming more educated regarding their medical history is empowering. Linda Adler, CEO of Pathfinders Medical Advocacy and Consulting, says, “there has been a solid, steady push over recent years toward patient empowerment… It’s been largely encouraged by dedicated patients and some providers who believe that health care isn’t only a right, but that people should have greater control over what happens to their own bodies.” [1]

 Self-advocacy is especially important for those battling cancer. New treatments are consistently being introduced into hospitals, so there are more and more options for patients to choose from. “Sometimes there are several choices with regard to treatment, and only you can know the option that is best for you. It is you living with cancer, and only you know how aggressive you wish to be with treatment, and what side effects [that] you are willing to tolerate… Honoring yourself means not only making the decision that is right for you alone but being able to cope with the opinions of others who may differ in preferences.” [2] 

Things to Consider

The following are other skills, techniques, and tips that you can use as a self-advocate:

Communication is key.

  • Don’t be afraid to speak up, ever. Your thoughts, emotions, and opinions are valid and deserve to be addressed. 

  • Ask questions. If you don’t know what something means, or want further clarification, ask your doctor, nurse, or any professional around you.  

  • If there are specific topics you want to address at an appointment, communicate with the receptionist or scheduler beforehand so that they can make adequate time for you; this is a right that you are entitled to.

Educate yourself.

  • Use technology, the library, and other resources given to you from your physicians to learn about illnesses, side effects, and benefits. 

  • Reach out to your health insurance company and become familiar with your policy; there may be benefits that you are not aware of, and thus not utilizing.

Use the internet as a resource – with caution.

  • The internet can be an excellent resource for obtaining up-to-the-minute information, reading about medical ailments, and getting involved in online communities. However, it is important to make sure you are getting accurate information. Make sure you are reading from reliable sources, such as those ending in .gov, .org, or .edu. Websites or articles should also include citations for where they are getting their information, rather than stating facts without backing them up with any concrete proof.

  • A common endpoint of medical searches may lead to testimonies – specifically, happy videos that show someone’s success story. Be wary of these, as they capture a moment of time, and omit a lot of medical information, usually for privacy concerns. They ar8e marketing tools crafted for you to relate to, so don’t place too much weight on them.

Stay organized.

Make a habit of taking notes at each of your appointments, and jot down any questions you have in between visits in a notebook designated for your medical information.

Compile and update a personal copy of your medical records. A lot of records are kept online now, and you can request copies at any time. Keep them in a special binder, or notebook; you can then refer back to them whenever you want or need to, and they will remain a great resource for you and other family members for years to come. We have created a resource that helps you obtain records, which you can find here.

Don’t be reluctant to get a second opinion.

  • Only “one in 20 Americans fall victim to outpatient diagnostic errors, according to the Agency for Healthcare Research and Quality,” but you know your body best.1Trust your intuition, and don’t be afraid to get a second opinion if you feel it is right. At worst, you will receive confirmation of the first diagnosis. At best, it could save your life.

More Information

Taking control of your health and becoming your own advocate is empowering. You know yourself best, so trust your intuition and don’t be afraid to ever speak up. To help you jump-start your journey, click here to access a helpful guide on how to compile a personal copy of your medical records.

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[1]Renter, Elizabeth. “6 Ways to Be Your Own Health Advocate.” US News. 2015.

[2]Eldridge, Lynne, MD. “How to Be Your Own Advocate as a Cancer Patient.” Very Well. 2016

CMN Hospital