The biggest thing you have to learn is that you matter and, therefore, your opinion about your care matters. In fact, it can be the most important opinion there is. After all, you’re the one stuck in your body. While a doctor may know how the body works, you know how you feel.
Learning to be your on advocate or a partner in health care is what the ePatient idea is all about. The idea of a patient as a potential expert and someone who should be involved in their care is growing in popularity but still hard for many to wrap their heads around.
In the past, health care has been paternalistic – rules by a lot of old white guys who, in their white coats, tell you what to do and you follow their instructions. You don’t ask questions and you don’t stray from the path – at least, you don’t tell them you have.
Now it’s all about working together, with the patient as a part of the team. There are usually two ways this can go – shared decision making (SDM) or informed decision making (IDM). Neither is better than the other in general, as their success really depends on what type of person you are and approach you want to take.
Share decision making is where you and your health care team would review options and make a decision together. There is back and forth and a discussion.
Informed decision making is where your health care team presents options along with information about each path and you choose one that might best fit your life.
In reality these two are very similar to each other. Again it really depends on your personality. If you like to be a little more guided or work on a team, SDM may be better as you’re not the only one really involved in the decision. If you’re very independent, IDM may be better.
I prefer a shared decision making process. As a rare disease patient, I have become an expert in my own diseases and how they affect my body. My current rheumatologist recognizes that and we speak much more like equals than a top-down approach you might get in other scenarios.
Something else that I love about her is how involved she is in the greater rheumatology community. She’s active with the local chapters of the Lupus Foundation and Arthritis Foundation. She’s also SUPER STOKED to see what I’ve just learned from the JA conference and what I will have learned from MedX after September.
What type of decision-making process do you enjoy? Have you tried multiple approaches?