Why am I concerned you ask? Because it is important for you to know how to get the best healthcare possible. If you have read my two blogs on types of patients, here and here, you have a better idea about yourself, and how you deal with your doctor. I hope that I have encouraged you to think and read as each illness or disease has its own problems. There is a lot of good information available for people that want to learn. There is some very poor information on the Internet and people that will take your money and provide no service.
The first resource is my favorite, but you will have to decide for yourself how well you like the information. Trisha Torrey is very good at what she does and she is a patient advocate for patients. Her advice is generally on target and she has a large following. I have used her blogs and articles for many ideas and like the way they are pulled together. Sometimes the topics are a little too interrelated and requires some sifting to find the answer to what you are researching, but generally, this is not a big problem.
The next two resources on e-patients are interrelated in a way since the first person writes for the second source as well. I have been interested in what they do for about a year, but I have not been actively reading everything until lately. They are leading areas that I am interested in, but have not had the courage to attempt. They are involved in participatory medicine, and have taken on some very active ideas and accomplished many worthy and notable actions.
I was just a passive patient for many years and I realize now how this was not a good thing, and resulted in some of my health problems. Some doctors like patients who just follow orders and will do just about anything to keep you a passive patient. They detest patients that are proactive in their care and some even reject empowered patients.
Either level is acceptable depending on how you perceive your needs. There is nothing wrong with being proactive and at the same time bringing in a patient advocate to assist you. Even many empowered and e-patients do this when they will not be able to speak for themselves. Please reread this about empowered patients. When you get to “The Empowerment Tipping Point”, this is where I feel the e-patient part is at now and will continue to be an influence.
Other organizations are still finding their way and trying to develop an influence in both areas. One group named “WEGO” claims this is “Working … and Health Activism” month, but I have not seen any other groups or organizations following this. In addition, this is only in their newsletter, which finally does have links back to their site. To me this is a poor newsletter, which I can only show you one link to part of it. The entire newsletter cannot be shown as one link.
There are now schools that teach patient advocacy (use “patient advocate” in your search engine. If you are really ambitious, there are foundations that you can join as a patient advocate. I am not a member of either so I cannot speak to which is the better organization. One is here and the second is here.
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