A Patient's Perspective on Health Information Management

Abstract

I have Parkinson's disease (PD), and the experience of learning to deal with it has made me aware of how complex managing health care information is. What has most surprised me since my diagnosis is the disconnect between providers who have responsibility for my well-being, my health information records, and the stance of my care team. In this essay, I use my experiences to explore what health literacy should mean for patients with a chronic illness, the problems with current health information systems, and how health care organizations need to design support systems with patients' interests foremost.

Keywords

• health care
• Parkinson's disease
• health information
• chronic illness