Last week, I shared a post titled: It Takes A Village: Working Together With Your Healthcare Team. In this post, I shared information on key members of your healthcare team who are in place to work with to help you understand your diagnosis, the treatment plan and the resources and tools to help you reach your full potential. Here is a recap.

Physicians are in place primarily to diagnose and treat people who come before them.

Pharmacists are in place to ensure your medications are what you need, are safe, do not interact with other medications you are on and that they are cost-effective.

Nurses are in place to assess, you, work to ensure the plan of care and orders are in place and being delivered in a safe manner. Nurses work closely with the patient and their families and alert your team as to issues that arise early on so hopefully, they can be prevented or addressed in a timely manner.

Therapists teach you how to exercise, live with your illness or injury in a safe and effective manner.

In Part Two, I wanted to drill down on a newer member of the healthcare team who is in place to work for you, the patient, the family or caregivers. These professionals do not do clinical work but do research, talk to your team members and help you understand your diagnosis, the plan of care and work to decrease the barriers that can derail your care. In other words, they work with you navigate the healthcare system safely, efficiently and in an organized manner.

Patient/Health Advocacy is an emerging practice that many nurses, social workers, business professionals and others who have had experiences in how the healthcare system works and who realize that the current system is not on your side and have the skills to help improve things. Today, people are responsible for paying for much more of their healthcare costs. Due to this, people are asking questions as they would when buying a car, buying a house or any other high-cost item. The problem is they cannot find the answers.  This is because our healthcare system is unlike any business people engage in when making major purchases. This is because the healthcare system is complex and convoluted that even the most experienced healthcare professional has trouble when they find themselves as a patient.

People find it hard to get answers from anyone in our healthcare system because insurance contracts are varied and convoluted. Hospitals and healthcare systems don’t meet the needs of those who use their services as the system is set up for the healthcare system.

Then we have the cost factor: most employers and individuals buy health insurance based on cost, vs. what the policy actually provides to them for the cost of the policy.

Also, most people take their health and healthcare services for granted and generally don’t worry about it till they are in a crisis. Many people buy a policy due to the cost, but if you buy a ‘cheap’ policy with a narrow network, a high deductible and limits on the geographic area you can seek treatment, and get sick with a complex condition, you find that you have restrictions and out of pocket cost that you might not be able to afford. This is the system we have.

To help people ‘learn the system’ and help them use it efficiently and effectively, Patient/Health Advocates are becoming more popular to assist people understand the rules, to present information that allows them to make informed decisions and to work with them to navigate the healthcare system and find the resources in a cost-effective manner.

If you have read my story, you probably know that I needed an advocate when I was found to have a Brain Tumor in November 2014. I was the one person in my family who was depended on to answer questions and know what to do in a health emergency. As I was the patient, my husband became my advocate. Luckily we had several friends who ‘stepped up’ and became my advocates. They helped my husband make decisions that allowed me to get to a Cancer Center and have access to the team that saved my life. I look back on this time and shudder to think of what would have happened if we did not have these advocates to help us. Would I still be here? Would I be in remission from a very serious brain tumor? Would I be functional as I am today? Would I have gotten the rehabilitation treatment that allowed me to gain strength, confidence and be the best I could be? I am not 100% and I can still have a remission, but I have a team that I trust, that I can ask questions and gain answers.

When I lost my job to my illness, my advocates help me research insurance policies that I should take after my COBRA ran out. They help me understand my choices, the cost associated and why it was worth spending the money.

When I was presented with bills that were higher than my mortgage I turned to an advocate who helped me understand what my insurance should pay and even reviewed the bill for me, so charges that were wrong or miscoded were questioned and removed. By being a patient, in a foreign atmosphere, that was costly, I found that having an advocate was useful in helping us understand what was happening. It gave me and my husband a sense that we were not alone and that we had someone on our side.

But how do you find an advocate?  There are a number of ways to find an advocate. Starting in March 2018, a national certification was developed that allows professional advocates working in this field to hold a credential that shows they meet standards that uphold ethical and professional standards. The Patient Advocate Certification Board lists Board Certified Patient Advocates and is working on building a searchable database that allows you to put in your zip code and find an advocate in your area.

There are professional associations for Patient/Health advocates that also have searchable databases that the public can use to find an advocate to help them. They are

Aging Life Care Specialists

Alliance of Professional Health Advocates

Greater National Advocates

National Association of Health Advocates

Washington State Health Advocacy Association

There are some not-for-profit organizations that are in place to help people understand how they can be their own best advocates and some who help those who cannot afford a professional advocate to learn how to advocate for themselves. Many of these organizations will come to your state to develop a program in your community. Check them

Campaign Zero Patient Safety

National Patient Advocate Foundation

Pulse Center for Patient Safety: Education and Advocacy

I hope these resources help you if you are looking for an advocate. If you have any questions please me know. If you have found an advocate who has helped you navigate the complex healthcare system, leave a comment.

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