Becoming a patient is automatic, the minute you are born you become one. As you go through life you become a patient to more healthcare providers. The title is what you make it, decades ago patients just listened to their doctors. Now, we have to listen and discuss any issues related to our health. It many ways it is easier said than done. So what do we do to become an empowered patient (or encourage someone to be)?
I attempt to keep my paper data organized with folders.
Sharing patient data is a hot topic right now. With HIPAA being misunderstood by many people and the fear of privacy being violated, most people cringe at the thought of releasing their health information to others. What if I told you that by donating your data and remaining anonymous, you could potentially save the lives of other people? In the rare disease community, this is how many people think. If you don’t think this way, I’m here to tell you why you should. Continue reading