How many times have we, as patients or caregivers, felt that we were not taken seriously or marginalized by our healthcare providers? How often do we hear of people leaving their endo appointments in tears? Or feel guilty because of a single number on a piece of paper? How many of us are not believed when we say that “Yes, I am doing what you said to do”?
The first Partnership with Patients Summit is scheduled for September 21-23, 2012 in Kansas City, MO. This event arose as the result of an epic failure in patient engagement. Regina Holliday (Read more about her here, seriously, read this one) wrote about it in a blog titled Pecking Order and has organized this event in a remarkably short period of time. It turns out that Regina is a force of nature when it comes to empowering patients. And as a bonus, she likes Dr. Who!
While we may spend an hour or two over the course of the year with our medical pros, the other 8,758 hours of the year are used by us to manage this disease. It’s all day, every day. How much better could that experience be if we could count on our doctors to view themselves as part of a team that is centered, not around our diabetes, but around us as people. Life includes so much more than just diabetes; we are so much more than our diagnosis.
Diabetics are empowered patients by the simple fact of diagnosis; we may just not realize it. We have no choice. I like to say that my endo may know more about diabetes in general than I do, but I will always know my diabetes better than they possibly can.
In order to simply survive, diabetics must be equipped with the skills needed to manage their condition. We are engaged in our own self-care since we get to walk out the door and keep on living. We are enabled to make choices about our self-care because we have to be, we have to do all the work. We know what works best for us in a given situation.
That is why I feel that we get the best outcomes when we are empowered. If I get a doctor that doesn’t want to play on that ball diamond, he get’s traded to KC and sent back to the minors. That is because I have made a choice. A choice that says “I am responsible for my health and I will find team members that will work with me to find what works best for me, not only as a patient, but as a person.”
Now let’s add social media to the empowerment we already possess (even if we don’t recognize it). We are able to research and learn an incredible amount from other people who are actually walking the same dirt road that we are. Using language that doesn’t require a medical degree to understand. People who “get it”. Unless someone is actually living with diabetes they truly can’t understand what it is like; the constant stress, mental, emotional, physical, financial stress.
Add all that together, that can make us a very powerful voice, not only in our own self-care, but also in enabling others to become empowered themselves. Sounds great, right? But how the heck do I make that happen? This is where the Partnership with Patients conference comes into play. From the conference description:
This conference is two-fold in its mission. We will be working on strategies for a grass roots support the Partnership for Patients campaign. We will also help enable patients by providing a place to network, learn and grow as patient advocates that focus on health policy.
Empowered patients are becoming a loud and powerful voice in pointing out things that are wrong in healthcare, not only here, but around the world. We all can see things that are wrong in healthcare from the amount of time you can spend with your doctor and how much a procedure actually costs to why this medication over that one. The more organized our voices are, the more focused our goals become the better we will be able to help those who come along behind us.
As a Type 1 diabetic, I can understand some of the things that go along with Type 2 but I can’t truly understand it because I don’t live it. Anymore than I can truly understand what someone with lupus, MS, rheumatoid arthritis, or fibromyalgia goes through. Or what a parent of a diabetic child goes through. But I can understand the frustrations they feel when dealing with our health system.
Events such as this allow us to step outside of our diabetic world and get a look inside the worlds of some other people. People who are willing to share their stories for everyone to learn from, regardless of their condition or role as patient and/or caregiver and/or healthcare professional.
If you have the opportunity to be in Kansas City that weekend, I hope you’ll spend it with us at the Partnership with Patients Summit.
© 2012 Scott Strange, Strangely Diabetic and http://StrangelyDiabetic.com