Becoming Your Own Patient Advocate
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.”2 Self-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.”2
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.”
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.”
Things to Consider
The following are other skills, techniques, and tips that you can use as
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.
- 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
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 are marketing tools crafted for you
to relate to, so don’t place too much weight on them. To learn more
about medical testimonies, click
- 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
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.1 Trust 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.
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.
 Renter, Elizabeth. “6 Ways to Be Your Own Health Advocate.”
US News. 2015.
 Eldridge, Lynne, MD. “How to Be Your Own Advocate as a Cancer Patient.”
Very Well. 2016