The Importance of Being an Advocate

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Anyone who stands up for someone or something is an advocate. For example, if, when you were a kid, you stepped in to stop someone from picking on your brother, you were being his advocate. If the person who was picking on your brother was 11 feet tall (at least in your eyes) and you didn’t step in to help, then you were being realistic about what you could do and what might happen to you.  That’s okay. We all have to pick our battles. There’s only so much you can do; however, be aware that there are times when there really is no choice. You have to be an advocate, even if the person you’re advocating for is you.
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As a Business Analyst
While not all advocates are business analysts, all ‘good’ business analysts are advocates. Our job (I’m one of them) is to represent the needs of the individuals who will be using a product like software to make their lives easier. I write the document that identifies what needs to be part of that software, like the field names, the types of information that can go in the fields, and what conditions/rules must be met before additional fields or screens are displayed and when the person using the software can go to the next step.

As the developers write the code that will turn the requirements into a reality, I’m the eyes and ears that watch and listen for any potential misunderstandings or rumblings that the requirements may have to change. When this happens, I whip off my Clark Kent glasses and go into Superman mode, which is really my user advocate role. When this happens, I fly around (not literally) trying to get answers and consensus on what can be done to still maintain the original integrity of the requirements while addressing any technical concerns that have come to light. This has to happen quickly so that development can continue and established deadlines can be met.

Finally, once there is a solution, the adrenaline levels drop, I put my Superman cape back in my drawer, and I pull out my Clark Kent glasses so that I can write my next set of requirements or get ready for the testing (another user advocate role) that will ensure the end result will be a quality product.  When this occurs, my role as a user advocate is done…until the next project.

As a Parent
The Herculean skills needed to be a parent are not fully appreciated until there’s a problem and you have to be an advocate for your child. It could be as simple as going to the school to explain that the dog really did eat Johnny’s homework or it can be as difficult as ensuring that your child gets the medical attention they need to get well both physically and mentally. This can be difficult. Sometimes the evidence is very clear that there is a problem and a quick solution is found, and that’s the end of it. Sometimes there are multiple trips to the doctor’s office, an after-hours clinic, or an emergency room because the solution (possibly a prescription) is not working. The symptoms are back or you know your child well enough to know that something still isn’t right.  The latter is the harder one to convey to a doctor.  I don’t know how many doctors would use a parent’s gut-instinct to trigger ordering new tests, but maybe they should.

But where’s the line? How do you know when to push for more tests and when to accept that there really is nothing wrong? It’s not easy.

As a parent, your job is to stand up for your children, so most of you (I’m assuming) would rather err on the side of caution than wait too long to seek a second opinion when the doctor you’ve been dealing with won’t do anything more for you…your child.
 
As a Patient
It’s unfortunate, but most of us would go to the ends of the earth to help family members or friends who are sick, but don’t even think about being our own advocate. My friend went to a doctor repeatedly about a period that continued non-stop for two years. Eventually the doctor ordered additional tests and discovered that my friend had endometrial cancer. She underwent treatment but her cancer kept spreading to new spots and she started subsequent treatment. Eventually there was nothing more that could be done. She died and I often wonder how things would have turned out if a diagnosis had occurred years earlier, when the symptoms first started.
 
Personally, I had my own problems with processes during my cancer journey. Multiple doctors submitted requisitions for me to have an MRI. When the requisitions were received at the hospital, the same radiologist kept turning down the requests. He wrongly believed that my doctors had made my first test an MRI without going through the other routine tests like a mammogram, ultrasound, and biopsy. I had gone through all those tests (one of them he performed unsuccessfully), but he still would not approve the requests. Fortunately, my surgeon was looking out for me (my advocate), so she sent me to another city for my care. When I did have my MRI, the new surgeon’s words for my results were, “You lit up like a Christmas tree.  We didn’t know the extent of your cancer until we saw the MRI.”

I also learned from the experience. Now that I could see the contrast in care, I knew it was time to be not only my advocate but the advocate for the women who would come after me and receive the same unacceptable treatment.

I wrote two letters and a report during my treatments and sent them to the Patient Care Representative at my original hospital. I received a phone call in response to my first letter. In response to my second letter, I received a letter from the problematic radiologist, which just made matters worse. The letter was addressed to his bosses and I was referred to in the third person. The tone of the letter was condescending, and totally unacceptable.

After my last radiation treatment, I took the time to gather all the documentation associated with my care. Using this information I wrote a 20-page report (including a table of contents and appendix) and sent it the Patient Care Representative. That report earned me a two-hour meeting with four people from the hospital (a patient safety specialist, a patient care representative, a director, and the Chief of Radiology). We discussed all my areas of concern and possible solutions. Although I don’t know if anything changed, I'd like to think that processes have improved.

In Conclusion
You may wonder why I did all this if my treatments were done. I did it partly for my own satisfaction but mostly for the women who would come after me. I chose to be their advocate, because I wasn’t sure if they would or could be an advocate for themselves.

Remember:

• You are worth fighting for. You are no less important than anyone else.
• Some doctors are better than others, just like it is for any career. No one is perfect and you have the right to ask questions.
• Don’t be afraid to get another doctor’s opinion. If you don’t feel confident that your doctor is doing enough or you don’t believe what you’re being told, get another opinion. I had a neurologist recommend brain surgery for my epilepsy and when I questioned him, he asked me if I wanted a second opinion. The second opinion was that brain surgery would not work because I had generalized seizures so removing any one part of my brain would not help.
• If you don’t believe a situation was handled correctly, report it. Unless you report your problem it can’t be fixed. If you won’t do it for yourself, do it so that the next person does not have to experience it.
• Help to identify a trend. Every person counts. If everyone reports the same problem, it will make it a higher priority to fix. It will give credibility to anyone else who has already made the same complaint.
• Being an advocate either for yourself or someone else is an empowering feeling, especially when you feel like everything is out of your control.