As you probably know by now, advocating for patients is one of my life’s callings. I do a lot of advocacy work because it’s one way I can fight against my diseases and I want to use my experiences for good. I’ve had a lot of bad experiences with doctors, companies, random people, etc., and I want to make sure that as few patients as possible experience what I have. I’ve written a couple of posts about this before, but I want to write a more complete guide to help you become the best advocate you can be. You don’t have to be a patients yourself to be an advocate, as you only need to care for someone who is a patient!
What does “advocating for patients” mean?
There are a couple of different ways of looking at this. The first means working hard for specific patients with specific issues. For example, you might be fighting to help your child’s treatment for a specific illness or their life. The second involves working for people at large with a specific condition. A third type of advocating is for the treatment of all chronically ill people in general. Basically, advocating can be very specific, very general, or somewhere in between.
Different types of activities that goes into advocating
Research: This means staying in the loop on new research that’s being done and doing research of your own. For staying in the loop on new research, figure out what organizations, publications, etc. announce new research for the condition or field you are interested in. For example, several of the organizations I follow send email updates including research updates. As for doing research of your own, it’s very important that you understand your/the patient’s condition(s) as well as possible. This will help you figure out what you can do to help yourself/the patient, different lifestyle changes that can be made, and better understand what is happening.
Follow: Follow people, organizations, and groups online that can help you. I’ve talked before about how great the online community is for spoonies, but there’s also so much more out there. There are organizations that can give you direction of where to focus your advocacy energy, and they can help you understand what’s going on in the community. It’s good to be looped into what’s going on in research, legislation, and otherA Gude to Advocating for Patients Click To Tweet
Join: Join advocacy groups! They can help give you direction and keep you up to date on everything you need to know. For example, I’m an ambassador with the Arthritis Foundation’s advocacy program. They email me about laws coming to federal and state legislatures and give me tangible things I can do to help arthritis patients. It’s great because it gives me direction when I’m busy and don’t have time to look for things I can do to advocate for patients.
Contact: This can be a huge part of advocating; contact your federal and state/regional government officials. Tell them how decisions they make will affect your life, educate them on your/the patient’s health conditions, and form a relationship with their offices. If there are specific laws up for debate, speak specifically about how that law will affect you/the patient. Use statistics and data so they realize how many people are affected by the condition(s), but also use personal stories so they get that personal connection. I’m a big believer in equal use of data and personal stories.