This post was contributed by
Karen Mercereau, RN Patient Advocates
A mentor for those who are building an advocacy practice.
Undoubtedly you are passionate about the role and determined to help people survive the medical system as well as possible. What do I mean about survive?
You may already know that the Academy of Medicine report (2115) that states there are 12 million misdiagnoses in the US annually and that there are up to 440,000 deaths due in full or part to preventable medical errors (Dr. John James, 2013). Your clients will not know enough to protect themselves in this environment. Your work will enable them to have a safer journey through the system.
To best serve your clients/families, you will need a process to follow, your own guide to a therapeutic approach. So, what is your plan to help, to advocate for your clients? One of the most important elements of developing your advocacy practice is to create and develop this process that will guide your steps in advocating for people.
One of the critical elements in your process is an intake procedure and accompanying paperwork. What should be in that intake paperwork? Well, certainly name, address, emergency contact and what the client’s own goals are along with the chief complaint (s). Then you might add in a past medical and surgical history, food or drug allergies and so forth. This process may take 1 to 3 hours and will begin to develop the all-important therapeutic relationship of trust with your client and family.
Your process should also include your initial and continuing advocacy plan which should include educational needs. Who is the learner? What is the learning style? Perhaps your plan may also include collecting and reading as many of the client’s historical records as possible to help you form a picture of all that may be involved. This could also light the way for you to help to ensure the integrity of the diagnostic process. Too often tests/procedures are repeated from different physicians due to the lack of adequate communication between offices. Or, conversely, certain tests/procedures are missing that might be of help to your client.
While considering all the elements that you would wish to include in your patient advocate process, it is critical to evaluate the sources of your information. Which internet medical information sources are reliable? Who is funding them and is there possibly a commercial bias? Once you have established the sites with the most veracity, you may wish to include teaching your clients about them as part of the educational portion of your patient advocate plan. Most people get their information from commercial sites such as TV ads (think pharmaceuticals here), magazine “informational” articles touting one product or another. This material is obviously biased and thus unhelpful. Because of this trend, the last study of health literacy in the US (National Association of Adult Literacy, 2003) demonstrated that only 12% of Americans are what is termed “health literate”. This means they can follow instructions on the medicine bottle and recognize a word or two on a medical document. You will find this report very revealing and helpful in your educational approaches.
Another critical element for your process is the study of all potential therapeutic approaches to the problems your client/family are facing. Looking globally in the literature (NIH, Google Scholar and others) will be of great value to your clients. In addition to the work being done here in the US, there is a great deal of leading edge research being done in other countries such as in Western Europe, Japan, and Israel.
This is a brief look at some of the potential inclusions in your developing advocacy process. What other factors might be beneficial to include? Please remember to copyright your end product to protect your work.