Tips to be a Great Patient Advocate

Navigating a diagnosis and treatment plan can be frustrating and confusing. But what if you could take steps to be a great advocate for yourself or a loved one? Dr. Emil Lou, an oncologist with a passion for patient advocacy, shares some tips below.

Patient Advocacy Tips

Take a Deep Breath.
When someone is diagnosed, it’s a natural reaction to be nervous or overwhelmed. Don’t let that stop you from taking the time to find the right path and the right care team for you.

Build Your Care Team.
It’s important to find someone that you click with—they should fit your personality and it should feel like a partnership.

Get a Second Opinion.
It’s never wrong. I strongly encourage it, especially in complicated cases.

Keep Track of Your Records.
Make sure you know where your records are and send them well in advance of an appointment. I might even coordinate care in advance, so everything is lined up before you come in.

Maximize Your Visits.
Set an agenda of what you want to talk about. Rank the issues—often, not everything can get solved in one sitting. We can then tackle the most pressing ones first.

Avoid Dr. Google.
I tell students and colleagues, just because it’s published doesn’t mean it’s true. It’s often a patient’s first instinct to Google in a panic. But sometimes that data is outdated, untrue, or irrelevant to your case.

Understand Medication.
I tell people to put all the bottles they are taking pills from in a plastic bag and bring them to the appointment. Then we take them out and they show me exactly how many of each they are taking. Sometimes you’ve misunderstood the directions on taking them. Sometimes a doctor wasn’t clear. This makes it clear.

Write Down Questions.
Every patient says, “I had questions but now I can’t remember what they are.” Keep a log or pocket notebook with you that you can write down thoughts or questions as they occur. You can also ask your doctor to send you home with his notes. And, above all, don’t be afraid to ask for clarification if you don’t understand something.

Every clinic is structured differently, but in my clinic someone picks up the phone. That’s where our partnership comes in. If my nurse answers a call and I’m needed, she pages me and we solve the problem in real time.

Demand Privacy.
If you have someone join you at an appointment, it’s OK to ask them to leave to have a private conversation with your doctor.

Be Honest.
Don’t leave out any information about medications you may be taking or other activities that could impact your health. It’s important to me to know whether something might interact with your chemo, for example.

Ask What You Can Do.  
The best question you can ask a nurse or patient coordinator is this: What do you need for the doctor to help make decisions at the time I am seen? 95 percent or more of your care happens behind the scenes, not at your appointment.

Show Up on Time. 
If you show up early, I might even see you early. Getting checked in and settled keeps you calm, which leads to a clearer mind during your appointment.

What other tips would you give on being a patient advocate?

Share them in the comments below or post them on the CaringBridge Facebook page.

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  • roger

    Avoid the er! From 2 Dr,s you go to 4,5 or more! The hospitalist takes over your care the oncologist’s take on “consulting” role be prepared for confusion

  • CaptMike

    Reading Dr Google is fine, but be careful of whose advice you take. Concentrate on medicine based sites and recognize that there is Not Always a “one size fits all” answer to your situation.

  • Brenda Sanchez- mother of Jose "ANGEL" Mojica forever 16

    Always listen to the patient (if you are a caregiver) and fight for his/her rights. and always respect their decision not matter what. Stay calm, meditate and more importantly pray. Pray to God to some how find the right answer for the person’s well being. Let the person know how much you love them and stay 100% with them support them in all decision even if you do not agree with them, remember is not about you is about the person you are advocating.

  • Shirley Templeton Toof

    Call ahead to confirm your treatment or appointment; does the facility have paperwork/orders required? My husband has leukemia (ALL) and we have spent many hours waiting because there was no order (even though we had a copy of the order), we had orders for blood work on a holiday put RN failed to ‘mark the boxes’ for the lab to know what testing was required; I could write several chapters about this. I know medical facilities are busy and the staff are only human; but when a patient encounters these delays week after week, it takes a physical, mental, and emotional toll on patient and caregiver.

  • Debra Hey

    The best book I read is When God and cancer meet.By Lynn Eib. She became a patient advocate in the same office as the one she was a patient with colon cancer. A must read!

  • Karen WTts

    Find a friend or family member to be the designee to relay news – it is overwhelming to deal with a of this and then have to re tell the diagnosis again and again