Independent Patient Advocacy and Brain Trauma

The healthcare system (or as I like to refer to it as the “healthSCARE system”) is one of the few industries whose major problems have not been solved by technology. Lack of cost transparency, the complexity of decisions, HIPAA-regulated access to information, and confusing insurance reimbursements are just a few of the problems plaguing the current healthcare system. The result is that It can be a full-time job just to manage one’s healthcare and the accompanying medical bills and insurance EOB’s.

Imagine being in a boat that is sinking a mile off the coast and you are forced to swim to shore. Many of us could make that swim with perseverance and patience. Now imagine you have the 20-lb anchor tied around your leg and forced to make the same swim.

Having a brain or spinal cord injury and navigating the healthcare system is like having that weight of that anchor pulling you down. Aphasia, memory issues, and chronic pain can make the simplest task (such as completing an intake form) or answering a question (“How often are you getting headaches?”) nearly impossible.

This is one of the reasons why there are 44.5 million unpaid caregivers in our country. Some patients, as much as they desire autonomy, simply cannot deal with the healthcare system on their own. They need help to navigate the complex world of the healthcare system.

As a personal example, nearly three years ago, my wife had brain surgery for a cavernous angioma. The surgery was in, what the doctors call, an “eloquent” location. So while the surgery was a complete success (thankfully), she has been dealing with aphasia, memory problems and chronic fatigue, sometimes severe, ever since.

So for nearly two years, I had to accompany her to every doctor and speech therapy visit and act as her private, patient advocate. This was to ensure that the providers were getting accurate and complete information as to my wife’s condition and progress. Although she is much better and can go to some of her doctor visits without me, I still print out lists of questions, medication lists, and checklists to make sure that her visits are efficient and productive.

So what is an independent or private patient advocate?

It is someone who:

  • educates patients about their rights in a particular situation;
  • makes sure that they are well-informed and able to make the best possible health care decision;
  • supports the patient in their decision;
  • works to protect and safeguard the patient’s interests; and
  • helps resolve medical bills and insurance claim disputes

Independent (aka private), professional health and patient advocates are defined as those advocates who work directly for patients, their families and caregivers, and not through an intermediary such as a hospital, insurer, or other person or organization that may have conflicting interests.

Why is it important to be an "independent" advocate?

This is really a question of loyalty and allegiance. It is true that hospitals often have “care coordinators”, “navigators” or “advocates”. But they are paid by the hospital and they are, therefore, obligated to follow the policies of that institution. Sometimes these policies are mutually beneficial to the patient and the hospital. More often they are not. Only an independent advocate will be 100% aligned with the patient.

What does a patient advocate do?

There are many different services that a patient advocate can provide. These can be divided into two primary categories: Financial Services and Health/Medical Services.




Medical Bill Review


Assessment Of Treatment Plan

Assist With Complex Medical Decisions

EOB Review


Care Coordination And Management

Pre-Visit Preparation / Post-visit summary

Claim Submissions & Reimbursement Assistance


Research Treatment Options

Chronic Care Management

Resolve Billing And Claim Disputes


Mediation Services

Form Completion Assistance

Review And Fix Billing Code Errors


Senior Care Planning

End Of Life Planning

Insurance Plan Selection Consultation


Locate and Research Healthcare Providers



Why do you need a patient advocate? Here are just a few:

  • Billing Mistakes: 50-80% of all medical bills contain at least one error
  • Emotions: Making healthcare decisions is a very emotional and complex process. It can be very helpful to have a third party involved to help sort thru the information
  • Lack of Agreement: Patients, family members and other caregivers often do not have a consensus and can disagree on the best course of action. Advocates can help all sides communicate and resolve differences.
  • Care Coordination: Even if a patient is in an HMO, there is usually no one dedicated to ensuring compliance to a treatment plan or medication regime. Patient advocates are a proven method to get the best results from your care.
  • Time is Money: Doctor visits are getting shorter and you need to make the most of them. A Patient Advocate preps you for your visit and can also attend your visit to assure that your questions are asked and answered.
  • The Internet Makes Things More Confusing: It is easy to get lost amidst the deluge of information available at our fingertips nowadays. Google, WebMD and LiveStrong can be just as confusing as they are helpful. Patient Advocates are there to make sense of all of the data so that you can make a well-informed decision.

With the help of secure technology (e.g., HIPAA compliant video chat, fax and email services), it is possible for an advocate to work with patients remotely. In fact, most of my clients are not local to me and live across the country. The geographical location of an advocate is usually not very significant in their ability to be useful to their clients.

In conclusion, if you are feeling lost or confused with the medical decisions you need to make, the bills you are receiving, insurance claims that are being denied, or simply need someone to be there with you during a doctor’s visit, then an independent patient advocate could be of real value to you. I like to say that a patient advocate is someone who turns the HealthSCARE System into the HealthCARE system.

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Topics: Resources, Financial

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