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Patient Advocates 101

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A patient advocate is a person who accompanies a patient to a meeting with a doctor or other medical person. If you are admitted to a hospital, a patient advocate can also help assure that the prescribed medical protocol is adhered to and that there are no lapses in infection control.

Patient advocates can be an important member of your team for the following reasons, among others:

  • Patient advocates can provide comfort during what can be a stressful time getting to,and waiting for, an appointment, test etc. 
  • During a meeting, a patient advocate can serve a variety of roles, including helping to ask questions you don't think of or are too embarrassed to ask, take notes and/or make a recording of the meeting so you can replay it later to be sure you didn't miss anything. 
  • Studies show that patients tend to forget half of what is said during an appointment with a doctor. After the meeting, a patient advocate can help recall what was said during the appointment and to keep it in perspective.

A patient advocate can fulfill a variety of roles. 

  • Before a meeting, a patient advocate can:
    • Help reduce anxiety while traveling to and/or waiting for an appointment.
    • Help you create a list of questions you would like answered during a medical appointment.
    • Provide a shoulder to lean on. 
  • During a meeting, a patient advocate can:
    • Take notes and/or record the conversation
    • Ask questions you are embarrassed to ask, or don't think about. at the time
  • After a meeting, a patient advocate can:
    • Help remember and talk about what is said during appointments
    • Help evaluate what is recommended.
    • Provide a shoulder to lean on. 
  • If you enter a hospital, a patient advocate can help avoid medical error and infection..

A patient advocate is generally a family member or friend. Care should be taken when choosing a person to act as patient advocate.  Rather than choose a person just because he or she offers, consider the following:

  • Step 1 to choosing a patient advocate: what would it be helpful for the person to do for you? For example, do you need the person:
    • To just be moral support and stay in the waiting area or to go into the exam or meeting room with you?
    • To ask particular questions that you may be too embarrassed to ask yourself?
    • To ask questions that you don't think of at the moment?
    • To help explain words or terms you use to the doctor, and to help explain to you words or terms that the doctor uses that you don't understand?
    • To take notes?
    • To work a recorder?
    • To help you in hospital?
  • Step 2 to choosing a patient advocate: Look for a person who has the qualities that are most important to you. For instance:
    • A person you are not embarrassed to talk with about your most personal subjects and intimate thoughts.
    • A person you trust, and with whom you can let your emotions show.
    • A person who knows you well.
    • A person who is sympathetic.
    • A person who shows up when he or she is supposed to.
    • A person who understands medical jargon or can learn it quickly.
    • A person who has good reasoning and problem solving abilities.
    • A person who can speak up for you and who can ask questions you may not think of - particularly when you are upset or in pain.
    • A person who understands that all decisions are yours to make - even when he or she disagrees. Such a person would not put his or her agenda ahead of what you do or do not want. 
    • A person who will be assertive for you if necessary.
    • A person who can be with you on an ongoing, as needed, basis.
    • It is a bonus if the person had the same health condition you are dealing with, or is a health care professional.
  • NOTE: 
    • In general, it is preferable to take the same person to each doctor's appointment. However, this is not necessary. In a hospital setting, a group of patient advocates may be most helpful. 
    • Professional patient advocates are available if needed.  

Once you have chosen a patient advocate or advocates, have a discussion about how the person could be most beneficial to you. For instance:

  • Discuss the situations in which you would like the person to accompany you and how frequently they are likely to occur..
  • Discuss your needs and what you would like the person to do. For instance, let the person know that is really important that s/he act as a second set of ears and/or to ask questions that you don't. 
  • Let the person know if you want him/her to act as an intermediary. For instance, if the person believes that you are not clearly communicating what you are tryng to say - or that you do not seem to be understanding what the doctor is saying, even though you may think you are.
  • Remind the person know that you (not the person) will make all decisions about your treatment and recovery. 
  • If it fits, explain that you may change your mind as you go along as to who you want to be your patient advocate. If you do decide to make a change, no one should take it personally. The key is your needs. Those needs may change over time.
  • While waiting in a doctor's office, it can be helpful to remind each other of your respective roles. If you haven't before, it is also a good time to pull together any questions or concerns you want to discuss at the meeting.

NOTE: If you want your Patient Advocate to be able to speak directly with your doctor or other medical personnel when you are not present, you will likely be required to sign a form authorizing discussion about your medical condition. This is known as a HIPAA form because it is required by the law known as HIPAA. While medical facilities and doctors usually have HIPAA forms readily available, we provide an authorization letter that you can carry with you and/or give to your Patient Advocate to carry "just in case."

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