Wednesday, January 28, 2009

How to Become a Patient Advocate

A commenter on my last post asked a question I've been asked several times before: How can I become a patient advocate? I understand that there are a couple of certification programs out there -- I don't know if they're any good -- and maybe I have to develop a course via book, video, maybe some live seminars to teach this. But until then, here are some of the basics.

First, you need to understand how insurance works -- self-funded versus fully-funded, how to read an explanation of benefits, how to file an appeal, how people with pre-existing conditions can get insurance, and at least a little about Medicaid and Medicare. And you have to learn about the Americans with Disabilities Act, the Family & Medical Leave Act, and the laws that apply to kids in schools (section 504 of the Rehabilitation Act and the IDEA, Individuals with Disabilities Education Act). And you have to get REALLY good at internet research so you can find resources for people.

In other words, buy my Know Your Rights Handbook, read it 12 times, memorize every word of it, and then you'll have the knowledge base you need.

That's really the hard part. The rest is something you either have or you don't, and that's compassion. I return every email and phone call the day they come in. When I don't have a good answer for someone, I take the time to explain why. I listen a lot. I let people lean on me as needed. I try very hard never to make someone feel like they're asking a stupid question. A lot of people think they have a case of discrimination when they can't possibly meet the burden of proof, or they want to know how to speed up their Social Security disability application, or they let their insurance lapse and now can't get coverage for their pre-existing condition. There are no happy answers to these sorts of questions, but they still are entitled to respect, and the better they understand why there are no answers, the more easily they will be able to leave the matter behind them and move forward.

If you're going to do this without being a lawyer, you also have to be very careful not to give legal advice. You can give information -- tell someone what the Americans with Disabilities Act says, how to invoke it, etc., but you can't give legal advice or you will be practicing law without a license and can get yourself in hot water. The distinction is between giving information and giving advice.

There are people out there who cross this line; I have had to clean up their messes several times. And that leads me to the other critical quality you need to be a good patient advocate: You have to be able to say "I don't know." You can always research. You can always refer the person to me or to one of the many organizations out there that cover specific issues. For example, I don't even try to master Medicare -- I know enough to be able to give basic advice, but if it comes to something more detailed, such as why Medicare will cover wound care if you need it every day but not if you need it only 3 days a week (a call I got from a hospital case manager yesterday), I refer to the Center for Medicare Advocacy or the Medicare Rights Center. Over time, you develop a library of referrals and you'll know which ones are responsive and responsible.

I think those are the key requisites for being good at this job: Knowledge, compassion, and humility. If you work on developing those attributes, I think you, too, can be a patient advocate. Jennifer


  1. Side note: the best doctors also say I don't know.

    There's also a difference between being an individual advocate and a systemic advocate. I would think that to do what you do, you probably should be a lawyer even if it isn't technically required.

    But if you want to make life a little better for your fellow patients, organizing in your community and pressuring state legislatures and Congress on health related issues is something every citizen can and should do. At this moment, many state legislatures are debating Medicaid cuts; if no one speaks out against these cuts, they will pass. If patients call other patients they know and show up at the office of an influential state legislature, then things might be different.

    You can also write letters to the editor, blogs, contact local television stations, organize local events that help with awareness of your disease, form your own organization dedicated to what you're interested in, raise money for organizations you support, etc, etc, etc.

  2. I will read Jennifer's book again and again lol. I will also request the information they said I could get free on how they made the decision on my case. That will help me to understand. I'm not sure what I can do (without college) besides what is mentioned above but I may as well learn it...


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