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Start Here

Getting Organized

Getting your information organized it the first step in learning how to become a responsible healthcare advocate for your health decision. We need to be the manager of our own health, or those of a family member.

• Be Prepared: Get a three-ring binder with pockets. Divide into sections for each type of care you are receiving. You can keep all doctors, PA’s, nurses, medications and insurance issues in the same place and with you for each and every healthcare related visit. RECORD all visits on your phone. Write down your questions, in advance and leave space for answers. Request your MD/PC/PT to stay until you understand the answers. It is always preferred to bring someone with you.

• Decide what is MOST Important for You. Recognizing how you manage your healthcare needs can be a major impact on your quality of life. When we are active participants in our healthcare, life has more meaning and fulfillment. The number one question for you and your MD is how to maintain your quality of life.

• Ask questions that are focused on a specific issue. Physicians focus on the disease process. The most important focus, for you, is how is the illness treatment, testing, affecting your quality of life. Speak up and ask why they are testing for something, whether it is or is not going to change the course of treatment or impact your quality of life.

• Ask your family what they understand about your wishes. Use advance care directives, as a starting point for the conversation – Five Wishes

is an excellent resource to open the conversation about what you want. It allows a person to specify what matters to them, in writing, so that there is no confusion in the future. These conversations can avoid a great deal of stress and uncertainty in the future for everyone.

• Decide who will have a say in what happens to you if you cannot. Choose the person with whom you have discussed these decisions. It is important to choose someone, who understands your goals and wishes and is willing to follow through on what you want. Guaranteeing that what you want will be respected when you no longer have a say.

1Make a Firm Decision to Improve Yourself
2Decide What is Most Important To You
3Decide Who Will Be Your Advocate (Family, Friends, Those Whom You Trust)
4Identify the Unmet Needs and Issues You Face
5Research the Unmet Needs and Issues to Identify Options
6Define the Goal of What You Want to Accomplish
7Identify Solutions to Fulfill your Needs and Issues
8Identify the Steps Needed to Reach Your Goal
9Take Action Yourself and with the Aid of Advocates