When I was newly diagnosed, I had no energy to do much of anything but stay alive, go to doctor appointments, read as much as possible to try to understand and try to do stuff around the house. I was also closing down my law office transitioning staff and clients and furniture and dealing with insurance issues. After some cycles of medication and interfacing with the health care system, I knew that I wanted to serve as a patient advocate, using my privilege, training and experiences to speak up for myself and others.
But how does one do that? I could get into lots of every day things everyone can do like providing feedback, answering surveys, and following up to ensure that there are protocols to address issues when they arise. But what I want to talk about to day is when some of us want to do a little more, to affect change.
I think everyone has their own path, their own sweet spot and I suspect that I’m still finding mine, but I’ve learned a lot in five (5) years. What I want to do right now with this post and probably quite a few more in the future is to explore the details of how patient advocates are compensated. I have been told a variety of things about the “going rate,” about what others have accepted, about what regulations apply and don’t. As a lawyer, after doing my own research, I’ve been able to confirm how some of what was later termed a “miscommunication” or just a “misunderstanding” of the regulation that different people thought was applicable.
It worries me that there are a lot of small marketing or research companies interfacing between larger companies with money and the patient advocates they want/need to pay.
So, in order to figure out if there is an issue/need in this space and to develop not just recommendations, but also eventually a training in how to get paid as a patient advocate, please consider answering my confidential survey, which you can find here.
Once I have some information, I will compile into a spreadsheet and make readily available to patient advocates for negotiating purposes. Stay tuned for a panel discussion on our MBC Sunday Series at SurvivingBreastCancer.org about making money as a patient advocate!